Collin's Memorial Service was a great success! Collin was definitely the star of the show. What a great way to celebrate his life.
Quite a few people asked if they could get a copy of Collin's slideshow. We uploaded it to YouTube as a High Definition video. Click on the link below to view the slideshow.
Thanks everyone for making Collin's Memorial Service something we will never forget.
Chet and Micah
Collin's Memorial Service will be October 29th, 2:00 pm at the Miracle Ranch near Gig Harbor. More details to follow. See link below to RSVP. (Please feel free to RSVP to say you will not be there if you wish.)
Memorial Service Link.
Collin has left us. He fought hard, but God took him home. It is very sad, but we are excited that Collin has been remade new and is now able to do all the things he could never do before (and more!).
Collin passed away Sunday afternoon at home. He was outside with Chet and Micah sitting peacefully in his wheelchair. We were there with him when he let go and for us it was a mixture of sadness and happiness. For Collin, I'm sure it was a huge relief. The last few months he has suffered a lot of pain, despite all our efforts to keep him comfortable. He never has to suffer pain again and that makes us very happy.
We will be announcing Collin's memorial service date and location very soon. (Tentatively set for Oct. 29). We will be inviting anyone who wants to come celebrate Collin's life. Collin was a wonderful little boy who had a positive influence on everyone he met (and never met). It will be really fun celebrating his life.
Thank you again for all the support and prayers you gave to Collin and Micah and Chet. It was a pleasure (and a stress relief) to do this Collin's Update Page. It was a pleasure (and uplifting) to read Collin's Guestbook. It is awesome to think of all the support we had from all over the world. Although we lost our Collin, we have been extremely blessed in so many other ways. One of those blessings is all the joy, laughter, lessons, love, and people Collin brought into our world and lives. Someday we will have the privilege of seeing him again.
Chet and Micah
Collin is still here and he’s been a strong little boy. He has been very relaxed the last few days. He has also deteriorated significantly since our last major update. We now know that Collin has very little time left. He is extremely weak and is barely hanging on. We expect Collin to go very soon. Please pray for peace and strength for Collin’s caretakers. Please pray that Collin continues to be relaxed and comfortable at this last stage of his life. We love our little Collin, will miss him so much, but are so excited to see him laughing and smiling in Heaven again someday. The angels and the Lord will be rejoicing soon.
We have an awesome video to share! My dad wrote Collin a song and our family and friends made it into a great music video. It was a big surprise to Micah and me. We had no idea that they all got together and made a video. It means a lot to us and it is very special for Collin. We are continually amazed by how much support Collin has. I know he has touched a lot of people's hearts and I hope you all enjoy this video.
The first boy singing is my nephew Jacob. Collin absolutely adored Jacob. There is an unexplainable connection between Collin and Jacob.
The second boy singing is Chet Hanchey. He is the son of our friends Perry and Lesa.
The two girls singing are my cousins Abbie and Hannah.
Thanks everyone for taking the time to give Collin this wonderful gift!
Here is the update we promised last week.
During the last hospital visit (at the end of August) we learned that Collin likely has a metabolic deficiency that is causing damage to his brain. We don’t know what triggers these deficiencies, but they have occurred recently and may be what significantly damaged his brain back in January. The latest MRI showed that Collin’s brain has experienced even more damage since the last MRI from March. The only portion of the brain not significantly damaged is the brain stem, which controls basic life functions such as breathing and heart rate. The rest of Collin’s brain is nearly non-existent, meaning that the metabolic deficiency has caused irreversible brain loss. CSF (cerebral spinal fluid) now occupies most of the space inside Collin’s head. The horrible reality is that the part of Collin’s brain that gave Collin his wonderful personality on this Earth is gone. He has lost his ability to purposefully move his muscles and he can longer process the world around him in a meaningful way.
Based on this saddening news and consulting with experienced doctors, we have decided that Collin’s comfort is the number 1 priority right now. The truth is that Collin has been suffering in a horrible way for quite some time. Our updates have always tried to be as upbeat and as positive as possible and we try to focus on the good things that happen in between all the bad things that happen. When we were originally released from the hospital back in April/May our goal was to wean Collin from as much meds as possible with the hope that we would see a little more of Collin’s awareness. Now that we know how much brain damage he has suffered, our goal is to give him as much medication as needed to make him comfortable. Unfortunately, we have not been able to keep him comfortable for long periods of time. More unfortunately is that Collin’s worst moments tend to happen between 10:00 pm and 6:00 am (when we would like to sleep).
Now for the hardest part.
We have started Hospice care for Collin. This means that we do not truly expect Collin to live for too much longer. We don’t know how much time Collin has left. Hospice care is typically for individuals who are expected to live less than 6 months.
We are very much at peace with this outcome. We love Collin as much as any parent loves their child. We have been through more than any parent should have to go through. We have seen Collin suffer through things no child should suffer through. But because we love Collin so much, we are ready to let him go. We don’t want Collin to suffer anymore. As sad as it will be when Collin decides to go, we will celebrate that he will be meeting Jesus and his cousin Amy in heaven, and he’ll finally be able to walk and talk and will get to listen to the best music ever made. We will get to see Collin again and he will be perfect. No genetic defects and no more cathing!
So here is what will happen until then.
We will be working with Hospice to make him as comfortable as possible. If he gets sick, we can choose to treat the sickness or not. These decisions will be very difficult to make, but we trust that God will give us the wisdom and the peace to make them correctly.
Please pray for Collin and pray that he can have comfort wherever he is.
Okay, we forgot to update the updates. We are home now. We've been home since last Tuesday. We thought we were going home on Saturday (8/27), but Collin had started doing some things that were concerning to the doctors. He was really, really relaxed. So relaxed in fact that he would just stop breathing for a little while. His oxygen registered fine on the monitors, but his color was not good. His eyes and lips were bluish. It took a few more days for us to get out of the hospital but he is more stable now. Lately Collin has been very relaxed and comfortable. We really only increased one medicine (the valium) and it really seemed to make him more relaxed and we've been able to keep his GI system working better. He sleeps most of the time, but he is not suffering from pain.
At some point in the near future, Micah and I will be posting a more thorough update of what we've really learned about Collin from this last medical stay. It is very complicated and we haven't had the time to put it down in writing. As you might imagine, what we will have to say is not good news. I don't want to sound like Mr. Gloom and Doom (those who know us should know that is not the case), but if you've ever wanted to visit Collin (and his wonderful Great Aunt Mary (and maybe his boring parents)) don't put it off too long. We love company. Collin loves company. Our doors are open to anyone.
By the way, Collin starts school tomorrow! Our school district actually has a program for Collin. I think it is pretty much a full day of school, 5 days a week. I hope they pay the teacher about a million bucks a year.
We hope to get a full update sometime soon.
Collin has been feeling a lot better. We did a gastric study to see how food moves through his small intestines. The study showed that his small intestines are working normal. His large intestines don't work worth beans, but hopefully we can manage his large intestines with some effort.
Collin's brain is still a mystery. The neurologists all agree that this is most likely a metabolic problem. It is believed that there is a problem with his ability to supply energy to his brain. Certain events may trigger this problem and his brain gets starved not from oxygen, but from energy (e.g. sugar and electrolytes). It is possible that this was the cause of his initial brain injury back in January. We will be doing some more testing in the future, but there really isn’t any fix for this type of problem. Apparently our metabolic process is very complex and relies on thousands of different enzymes to work properly. The testing may help us understand a little more about Collin’s metabolic problem, but won’t necessarily provide any solutions.
The plan is to go home this afternoon (after we get back from the Sounder’s game!).
Collin has not suffered any strokes. The MRI showed that there are some strange anomalies that looked like a stroke on the CT scan. There is still a big concern about these anomalies. Neurology can’t say what is going on right now. As usual we need more tests to get a better idea of what is happening inside his head. Whatever it is it isn’t good and Collin needs lots of prayer. He is a strong little guy with a great spirit.
Some good news is that we’ve been able to get his digestive system feeling better and we’ve been fighting a urinary tract infection (and probably winning now). He is still in a lot of pain, but nothing like Saturday. Hopefully, we will get him feeling better and can start focusing on finding out what is wrong with his head.
We are back in the hospital. We drove Collin to Seattle Children's Hospital Saturday at 3am. We had decided at 2am that Collin was in too much pain and that there was nothing we could do to make him better. We have been doing many, many things to try and get him comfortable and happy, but nothing has been a long term solution. It turns out that our parental intuition was right, because Collin quickly deteriated once we hit the road. For some unknown reason, Collin seems to be back to his storming. Micah and I think it is related in part to his GI issues. As part of his work-up, Neurosurgery decided to check his head pressure and also get a CT scan. Head pressure was good, but the CT scan had some alarming results. I was told at about 11:30 last night that Collin has had a stroke. Huh? The medical team was very concerned and ordered an MRI. Collin had a stream of nurses and doctors checking on every little peep he made throughout the night. We are still in the early stages of figuring out what is wrong with his brain, but whatever it is seems to make the medical team concerned. Neurology will be getting involved. The only thing that we really know at this point is that the stroke (or strokes) are not brand new. They are at least one week old. Most likely they are a month or so old. That's about all there is for now. We'll keep the updates going as much as possible while we are in the hospital.
Okay, so it has been a long time since we updated everyone. We tried to warn you that the frequency of updates would decrease when we came home. It is amazing how much more time you have on your hands to do updates when you are spending the majority of your time sitting around in the hospital. When you are at home, with no 24/7 nurses to help, you don't have time to think let alone do updates, facebook, check email, or barely keep up on the news. I'm sure you all are wondering how Collin is doing since we've been home, and wanting to know how to pray for him and for us. I'll try to summarize the past couple months the best I can.
The good news is that we have reduced one of his medications by 3/4's since we came home. The sad news is that we haven't been able to lower it from that dose for over a month. With the reduction in medication he is more aware and alert. He has been receiving Physical Therapy and Occupational Therapy at home throughout the summer, in addition to the work that I (Micah), Aunt Mary, and our wonderful new caregiver do with him. The biggest challenge that we have had is that starting in June we have had issues fighting nausea, constipation, and gas accumulating in his intestines. This has been very painful for Collin, and we have done everything imaginable to help keep him comfortable and out of the hospital. Hopefully we have found a method that helps. We have changed formulas a couple times, and been given several tricks to use to help alleviate the gas and constipation. I think we have a handle on the constipation, but the gas is the current problem to work through.
The question at the end of the day is, "How is Collin doing? How was his day?" To be honest, it changes from minute to minute. He can be having a fabulous calm, aware day, to screaming his head off and trying to keel over in pain from the gas in his intestines within a snap of your fingers. He might have two good days, and then all of a sudden it is back to being uncomfortable and us not knowing how to help him. So there is no real good answer to that question, and I don't think that there ever will be. In some ways he is like his old self in that he likes to wake us up in the middle of the night, sometimes just for company. It drives you crazy when he is happy and sleeping when you leave him at 2am, but the moment you lay your head on your pillow he starts to barely whine. You get up and stand outside his door he stops, ... head to pillow = whining, ... outside his door = quiet. He proceeds to do this pattern to you every hour or so for the rest of the night. All he wants is you to be in the room with him no matter what crazy hour of the night it is. I don't know many people that function very well at 2am, but I am certainly not one of them. All I want at that hour is a nice warm cozy bed, and start to get very irritated by the 3rd or 4th time he does this to me.
I am very grateful that we are still home and enjoying our own house and yard. Although the sunshine has taken its time coming this year, we are happy when we see it. Our garden is doing fabulous! We planted too much lettuce again this year, the radishes came and went lickety-split, and all the poppies that I didn't plant (they just appeared) were fun and cheery until they started drowning the blueberry bushes. It is so fun to be able to go pull your own carrots, pick your own peas, and watch the pumpkins meander all over the garden and through the fence. Even the sunflowers are shining their bright faces over the birds that come hunting for worms in the crowded garden. It makes us a little happy that something in this world is beautiful and growing. Thank you to all of you that check in every once in awhile. We are still here and alive, just a little busy still trying to figure out how to best help Collin.
Here is a quick video of us at home.
Things are still going okay. Collin had his Baclofen pump refilled today and had his Baclofen dose increased by 20%. Hope to see his muscles relax a bit more.
The purpose of this update is to inform everyone that I posted some new 2011 pictures on his picture page. I also added some videos below. This update was extremely difficult for me because these pictures and videos break my heart. The pictures of him playing outside were taken just days before his seizure on January 24th.
On January 22nd, Micah and I were working on the spare bathroom (the remodel that we are finally getting back into) and Collin was playing with his toys in the dining room. As any good parent should do, I went and checked on Collin after I hadn't heard anything smashing or breaking for quite some time and found that the front door was wide open. Collin had escaped the house (and of course didn't bother to shut the door). I found him playing in the dirt by the garden. We let him play in the dirt and he eventually made his way down the hill towards the portion of the property that collects water and of course mud. The pictures and video tell the rest of the story.
The pictures of him playing in the water on his tricycle were taken exactly one week before his seizure. He loved playing on his tricycle. He never learned to pedal on his own, but he used his feet and scooted it around everywhere. He was funny because when he was propelling himself on the tricycle he could steer perfectly, but when you pushed him he'd forget to steer. He also had at least 2 occasions when we failed to watch him properly and he went down the hill and crashed at the bottom.
The other pictures posted are recent. They show Collin hanging out at home. Hope you enjoy the pictures and videos!
Collin has decided to start sleeping in during the morning, so it is giving me a chance to catch up on a few things like emails. I finished my emails and am sitting here drinking a cup of coffee, so why not do another update!
As Chet said, Collin is doing pretty good. One might say he is growing just like our garden! We had salad last night with our first lettuce of the year. As for Collin, he is much more stable medically than I expected at this point, which is really exciting. He does sleep (or pretend to sleep) a lot. The wonderful thing is he is tolerating more and more stimulation, whether it be sounds, touch, smells, or stretching. The stretching and physical therapy is not his favorite, and never has been. From two months old he would whine, complain, and try to figure out how to get out of doing things that challenged his muscles. That has not changed one bit through all of his changes in the past few months. Now he furrows his brow, puts on the best frown face you can imagine, cry's like "Oh, my goodness this is the worst think in the world!" and might even stick his lower lip out with a big pout, all in an effort to try to trick you into thinking to leave him alone. It works sometimes, but we know that the more we challenge him the better off he will be in the long run.
Collin also has a knack for attracting girls or women to come visit him. I'm not sure how he does it, but yesterday he had three wonderful gals working with him. One doing occupational therapy in the form of a hand massage. How I wish I could pretend to sleep for a couple months and start waking up to massages! Such a rough life he has. Not only do visitors spoil him with massages, but his parents bought him a minivan last night as well! He just bats his long eyelashes and big brown eyes exuding the attitude, "Won't it be easier to have a minivan for all my fun stuff? You know, wheelchairs and any other device you think I might need?" So we give in, knowing it will be easier for us and him. Thankfully we figured out a way to keep our Subaru, that we just didn't want to say goodbye to yet.
Anyway, that is about it. Not too many changes, but enough to report good news. We have been very lucky to get the equipment that we need for him and ourselves. The sunshine is also sprinkling some light on our garden to help it grow and get us outside more. I even got my long overdue haircut the other day while Collin got pushed around in his wheelchair hanging out at a lake and some horse barns with Great Aunt Mary. Thanks for all the continued prayers! We honestly do believe they are still working. Will try to continue updates a little more frequently!
Okay we are really bad at doing updates while at home. Our new life at home is extremely busy. In fact, I've got just a few minutes, then I'm off to bed.
Collin is doing pretty good. Typically from about 6:00 am to 10:00 pm Collin is pretty fantastic. He spends most of his time sleeping, but has moments when he's awake and looking around. He really enjoys sitting in his new wheelchair and looking out the window. We've had some nice days around here so we've spent many hours outside working in the garden and the yard. Collin will sit for several hours in his wheelchair without making a peep. We try to interact with him as much as possible, but he still prefers to be left in peace. Fortunately, he likes to be pushed around in his wheelchair too. We've gone to Fred Meyer, Costco and the park a few times. He does really well.
We still haven't figured out how to make Collin happy at night. Sometimes he does well at night and other times not so well. Seems like Aunt Mary gets the good nights and Micah gets the bad nights. I get the weekends and he's hit and miss. Because nights are hard for Collin, we are all a little (maybe alot) tired (and sometimes we get a bit cranky).
The next big thing for Collin is getting a new minivan. We've been left no choice but to swallow our pride and start thinking about getting transportation that works for Collin. Whoohooo.
That's all for now. I'll try and post a new video sometime.
Sunday 5/15/2011 11:00 am
Collin really likes being outside. He can spend several hours outside in his wheelchair and is as happy as can be. Only problem is that he doesn't like being in one spot for very long. This means we spend most of our outside time pushing Collin around the property. This is fine for now as long as he is happy. Eventually we would like him to be able to sit there and be happy (so we can get work done outside).
Collin is still doing okay. Things are not great, but we are managing. Tomorrow we have several doctor appointments in Tacoma. He really needs a Baclofen pump increase. His muscles are very tight and are contributing to his discomfort (and discomfort leads to tighter muscles (so which comes first??)).
Anyway, here are a few pleasant Collin Videos.
Wednesday 5/11/2011 5:00 pm
We made it home on Monday. We've been way too busy to do an update. In fact we are still too busy, but we though we should at least say we are home again.
For now, please pray heavily for Collin. He needs a lot of prayer. He is going through another very difficult phase. Also, please pray for Micah, Chet, and Great Aunt Mary. We need a lot of strength to get through this phase.
We'll give a more detailed update sometime when we get more time.
Saturday 5/7/2011 5:00 pm
Happy Mother's Day Weekend to all you mothers. It is also the opening day of boating season here in the Seattle area. That means that it is crazy busy with traffic, boats and people just down the road from the hospital. Chet and I took an adventurous round about route to the hospital from home this afternoon in order to avoid traffic. It was a fun drive that took us through some neighborhoods, by a lake and eventually to the hospital in a reasonable time frame. The nice thing was that we were able to avoid the horrendous traffic that was on the main freeways. When we arrived Aunt Mary informed us that Collin had a wonderful night and let her sleep all night (which has been an unusual occurence this week). This makes us very happy, but not convinced that it is something that will be long lasting. We will take it, and hope for the best in the mean time.
The other day we mentioned that we could be going home this weekend or early in the week. It will not be Sunday, but more likely closer to Tuesday. We just have to take things a day at a time right now, and wait and see what Monday brings. I hope everyone has a wonderful weekend and a marvelous mother's day! We won't be doing anything spectacular, but are happy to get a few small breaks from the hospital when Collin cooperates, and family helps. We will enjoy spending time with each other and our families when we are able to see them. Thank you to our Moms, Grand-Moms, and all the individuals who have taken on motherly roles in our lives to make us who we are today. We appreciate you and hope that you know that.
Thursday 5/5/2011 10:30 pm
Collin continues to do okay. He has rough moments here and there, but seems to be manageable. I think we are at the point now where we can start planning on going home again. We might ask about going home on Sunday. If that doesn't work out, then hopefully early next week. I think we've come to the realization that this is just how Collin is going to be for a while. Its very hard watching him like this. It makes me very sad. Even though he is right here, I miss the old Collin very much. I don't even have the words to say how difficult all this has been (I've been sitting here for quite some time trying to come up with the words and couldn't). So today's theme for me is the seedling. It not only represents the spring season and our new garden, but in my mind represents a new chapter in Collin's life. We don't know what this seedling might be, but we know that if we give it all of our love it will grow into something wonderful.
We don't get cheesy very often, but apparently Chet did tonight (he wrote the first paragraph, but asked me to finish). It may sound a little sentimental, but we really do hope that Collin continues to grow. It is too difficult to think about the possibility of him not being a beautiful part of our lives. For some reason it has been a sad week for both Chet and I. There are times when we can't help but cry because our hearts hurt so bad. I often sarcastically say to our nurses or doctors, "It could be worse," because if I don't say it then I am admitting defeat and would just break into a million pieces. Part of what I say is true, because we have already lived through worse in the past few months. I also know that in many ways we are lucky because we still have a wonderful home, supportive family and friends, and Collin is still here. So although he might break our hearts once in awhile, and make us feel like giving up, we won't give up in the end. We will continue to trust in God and hope that someday, Collin might sprout a small smile or twinkle from his eyes.
Wednesday 5/4/2011 10:00 am
HOORAY!! The Sounders won their game again last weekend, and we were there enjoying ourselves. Things weren't perfect for Collin Saturday night, but good enough for us to get away for a few hours for the game, and then on Sunday afternoon to plant our garden at home. So although Collin had an okay, but not great weekend, Chet and I decided it didn't matter if we were at the hospital or not. We don't like to leave him, but sometimes it doesn't make a difference for him in the end if we stay 24 hours a day. This allowed us to play a little and also feel very productive and enjoy the time getting our hands dirty in the garden. Hopefully, our few hours of hard work and fun will pay off this summer and fall when the corn, carrots and other vegetables come in.
Collin has been doing better, and we have an educated guess/ explanation as to what happened and why it appeared that he had an infection. To put it as simply as possible: Collin had an infection. We treated it, and he was getting better. We then weaned his Clonidine patch. The Clonidine patch medication he has been on controls several different things, including sedation and blood pressures. When we withdrew the medication from his system, he may have reacted with a fight/ flight sort of response, which may have caused an increase in white blood cell counts. So he wasn't showing typical withdrawal symptoms, but his body responded with high blood pressures, increased awareness which may have been overwhelming for his brain and appeared as pain, and a high white blood cell count that appeared as an infection. Talking with individuals that use Clonidine on patients they haven't ever really heard or experienced seeing high white blood cell counts when withdrawing the medication, but they usually don't withdraw it as quickly as we did and aren't looking for signs of infection. To summarize Collin's body reacted in a manner that looked like infection and pain, sending us on a wild goose chase, but in reality probably was his body going through unusual withdrawl symptoms. We put him back on oral Clonidine to control his blood pressures, rather than the patch form which was increasingly irritating his skin. He has been getting slightly better since.
So what have we learned from all this? One, Collin doesn't like change. Two, that he is not allergic to Clonidine. Three, that Collin is very complicated, and likes to challenge everyone's medical knowledge. Four, certainly doesn't follow anybody's rules. And five, Collin can be more awake and follow people with his eyes as long as he isn't too stressed or in pain! This last one is another reason why we wanted to have him come off the Clonidine. There has been a couple times when we have seen him be wide awake and tracking individuals around the room. This is very exciting, but in the same breath he can get very overwhelmed and over stimulated if you aren't careful. We already knew most of the previous things, but there is always a learning curve with Collin. At least we learned that he still needs his Clonidine, and can get it without having skin reactions. We should be able to go home at some point, and wean medications there, but just at a VERY SLOW careful rate.
Collin still has the attitude that, "Slow and Steady wins the race." We are in this for the long haul with him, and the periods of alertness that we've seen while in the hospital give us a little bit of hope that we will have some small amount of interaction with him eventually. It may take months or possibly years, but we will be there for him no matter what the outcome is.
Friday 4/29/2011 7:00 pm
Micah told me earlier today, "I'm not sure what to put in his update". So she didn't. Then she asks me later, "So have you done an update?". And I say, "I would, but I'm not sure what to say".
So that's where we are. We are confused. The doctors are confused. Collin is not comfortable. We are tired. Collin is tired. I'm hungry.
2 hours later (9:30 pm)
We are back from dinner. Thank you Kay and John for the company and conversation away from the hospital. We enjoyed the two hours away, and getting to know you a little better.
As Chet said earlier, we don't really know what to say or how to explain the complicated situation we are in at this point. I will try to explain the week. We have been on IV antibiotics, but have not identified an existing infection that we are treating. Collin is better than last Friday, but definitely not good. He has continued to occasionally vomit bile, have high heart rates, high blood pressures, and high white blood cell counts. We continue to investigate possible causes, but only to find that each possibility does not appear to be a problem. While in the hospital for almost 2 weeks we have weaned him from one of his blood pressure medications (the clonidine patch). Thursday we spent the day waiting to do a series of x-rays and a head CT scan to examine multiple possibilities of what was going on. The two x-rays came back normal, the head CT not normal compared to previous recent scans. Everything seemed to happen late in the afternoon to evening, so we knew we would be getting a clearer picture and answers in the morning, expecting that we might be doing another neurosurgical procedure of placing a shunt in his head.. However, we didn't get a clearer picture, and we still don't have a "this is what is causing all of Collin's problem's" answer. Instead we have a plan to stop treating for an infection that we can't find, restart and then wean his blood pressure medication in a different manner than we weaned him from before, and continue to monitor the pressure inside his head to see if that is the problem. By now you all are probably way more confused than you could possibly imagine. The strange thing is that it actually makes a certain amount of sense to us and all the doctors involved. It is by no means easy to get all the doctors involved in these decisions together at one time, but it somehow happened and the current plan of action is what transpired out of that meeting. Chet and I at this point say to the plan, "Sure, sounds fine as long as it makes Collin feel better in the end." In summary, don't expect any good explanations or answers from us for a little while. The plan of action may take a few days to see how it plays out.
Thanks for all the prayers and we hope to say sometime soon, "We've finally figured it out! He just ate too much Easter candy!" Oh, wait, he can't even eat candy right now! I guess that means that Chet and Micah ate it all.
Monday 4/25/2011 9:00 am
Good Morning or Afternoon to you all! I hope you had a fabulous Easter. Although we spent our days in the hospital, we had a pleasant weekend. Saturday was beautiful weather, which brought out T-shirts and shorts for some people. Sunday was a little rainy, but a very clean, crisp day. We actually enjoyed the wet showers and the smell of spring. We also had a few visitors, which was nice. A couple friends were kind enough to bring us a smorgasbord of delicious food for dinner. One can never complain when you have good company, good food, and Collin has a good day!
I'm sure you are tired of the back and forth, better and worse with the Collin updates you read. I know, because we are too. We aren't the only ones scratching our heads at the roller coaster life Collin leads. The doctors continue to wonder at him as well. Basically nothing about Collin and his symptoms makes sense to anyone. Individuals usually do not show huge signs of infection on Friday afternoon, mild signs of infection Saturday morning, and no signs of infection on Sunday morning. This is exactly what Collin did, which makes the doctors go "HUH?" Most bodies do not recover that quickly. This is a very wonderful thing, but at the same time it makes us and the doctors have no idea what we are treating, and if he is showing no signs of infection do we continue to treat him for one? Do we continue the course of antibiotics as planned and see what happens? Do we stop the antibiotics now and see if the signs of infection come back? Why is he gagging when he gets his medicines into his intestine when there isn't anything apparently wrong there, and gagging at other sporadic times with no apparent cause? What are the red skin splotches and tiny water blisters, both of which appear and dissapear within minutes for no identifiable reason? These are all questions that we and the team of doctors keep asking. So if you are confused, you aren't the only one. All I could think yesterday was, "Why can't Collin just do one thing in a rational manner?" For once it would be nice to have some consistent and rational events with him. I'm tired of testing my knowledge and understanding. I often feel like I belong in the tv show House or Mystery Diagnosis, and sooner or later someone is going to walk in and say, "Why haven't you thought about this?" and explain at least some of what Collin is doing. Then I realize, no I live in the real world where Collin just likes to play the game of, "Can you guess what is wrong with me now?"
Although he is frustrating, confusing, and complicated, he is still "Sooo Cute" (according to his new nurse this morning), and doing better. That is all we want in the end. For Collin to be doing better for more than just a day or two. That is all we have ever asked for through all of this. So thank you for all the prayers, and we will try to keep you updated as things continue to play out this week.
Saturday 4/23/2011 1:30 pm
HAPPY EASTER WEEKEND!! According to Chet today is supposed to be the nicest weather so far this year! We are loving the sunshine and warmer weather. It is truly showing that it is Spring. We plan on trying to enjoy the nice weather at some point today because this nice weather is not supposed to last long. The bad news is that it we aren't at home to try to plant our garden this afternoon, and we won't be home for Easter tomorrow. The good news is that Collin is doing better than 24 hours ago.
Collin had informed some of you through the guest book that he would probably be home by Easter. The improvement we were seeing took a dramatic turn for the worse over Thursday evening and Friday morning. By Friday night Collin was showing obvious signs of pain and symptoms that an infection was still there or returning. Early in the week we had been treating Collin for an unknown infection with IV antibiotics, and he improved. By mid-week we thought we had identified the infections and were treating them with oral antibiotics. However, Thursday night and Friday morning he deteriorated and we put him back on the previous IV antibiotics and tried to pursue if we had missed finding the true infection. Our biggest worry (that we have wanted to avoid), was having a Baclofen Pump infection. This has several serious repercussions, one including that the pump would be removed and not be able to be put back in for a minimum of 3 months. Friday night there were some indications that it "might" be the pump that was the problem. We spent the evening doing ultrasounds, CT scans, talking with doctors, radiologists, and neurosurgeons to try to get a definitive answer whether it was or wasn't a baclofen pump infection. Around midnight we finally got an answer of, "All the signs say that it isn't a baclofen pump infection. We need to rule out all other possible sources of infection before we revisit this idea." This is the answer that we all wanted, but it has still left us with "What is the infection that Collin has?" Shortly after we finished talking with the doctor around 1 AM, Collin started to improve and settle down from all his discomfort. He was still on edge and irritable, but was better than he had been all day. Since then he has been resting comfortably most of the time. It was really quite simple (see picture below). He seems happy when you cover his ears, then his eyes, and then stick a bite block in his mouth. Chet and I were able to get some sleep and wake up to a beautiful day, and a good group of experienced doctors.
Although we don't really know what is specifically wrong with Collin, we know that he is improving at this moment in time. That means we aren't going to change how we are treating him. We are still trying to find out the source of infection, but not going to do the extreme measures that we were considering last night. Those have been postponed to revisit if necessary at a later date. For now it is wait and watch for continuing improvement, and search for the mysterious infection.
Too bad Collin doesn't like to leave his problems in plain sight for all to see. Rather, he likes to make the Easter Egg Hunt as difficult and complicated as possible. Hope you all have a fabulous Easter Weekend with friends, family, and hunting for real Easter Eggs!
Monday 4/18/2011 1:30 pm
Well, we've had a slight setback. We are back at the hospital. Hopefully it will turn out to be nothing too serious and we can be back home in a few days. I won't go through all the details, but it looks like Collin is fighting some kind of infection. We had been doing very well at home until Saturday afternoon. Then by Sunday afternoon Collin's condition had deteriated to the point where we knew he needed medical attention and we realized that he could not safely travel 45 minutes in his car seat to the hospital. We had to call 911 and get him transported to Mary Bridge by ambulance. We stayed at Mary Bridge for a few hours and they arranged transport to Seattle Children's. We arrived at the ER in Seattle about 11:00 pm. At about 2:30 am, we moved down to the general floor and now have the same nurses we've had before. It's almost like we never left.
Collin is doing quite well again. Best case scenerio is that he is fighting some virus and will heal soon. Next best case would be a simple urinary tract infection. Things that wouldn't be good are pneumonia or a Baclofen pump infection. So we are hoping for the best and are hoping very much that Collin gets better quickly and we go back home.
Here is a video update that we did last Wednesday (4/13).
Wednesday 4/13/2011 11:30 am
Collin has been doing fabulous. I think he likes being home very much. He spends a lot of time sleeping, but he has been alert a lot too. He seems very peaceful. Yesterday was our first full day home. Collin spent his first morning sitting on the big lazy-boy chair watching Curious George and Champions League soccer. Then he spent a few hours in his bedroom on his hospital bed. Then he spent a few hours on the living room floor propped up on some cushions. I think he likes to look out the big front window and likes the familiar sounds of home. Great Aunt Mary (she really is GREAT) has been here watching, learning and helping a great deal. She knows that if something were to happen to us as parents, that Collin would be in pretty dire straights if someone else doesn't have a clue what to do. Although there is a schedule and things to do and keep track of with Collin, she is very good at remembering what he used to like. For example, Collin has always loved ceiling fans. When she turned our fan on yesterday, he seemed to enjoy just watching it go around and around.
Micah has done a great job getting us prepared for being home. Although Collin's medication schedule is quite complex, Micah has prepared a system (with some minor tweaking as we go) that has made the meds very manageable. Collin has done his part by giving us virtually no problems thus far (besides one massive poo that escaped his diaper while on Aunt Mary's watch).
I am glad that I've been able to stay home so far this week. Micah has spent a lot of time on the phone coordinating appointments and working with the medical providers to get us on a monthly schedule of supplies. I've actually stayed on task and have been taking care of Collin and helping get things organized. Usually I get side tracked and end up starting some irrelevant project that never gets finished.
So we are all doing good. Collin is making progress every day, even if it's just getting better from his Baclofen pump surgery. We are just trying our best to make him comfortable and giving his brain lots of time to heal.
Monday 4/11/2011 9:30 pm
We made it home!
But not without some adventure. Shortly before leaving the hospital, the care coordinator (at the suggestion of a nurse practitioner determined to find a way to help Collin on his last day) faxed a form to the Washington State Ferry system that gave Collin "priority boarding" because of his medical condition. We were not sure if we'd even try taking a ferry because we didn't know when we'd leave the hospital and how bad the traffic would be. But as we hit the highway we decided that we had a chance at catching a 4:25 direct route to Southworth. Catching that ferry would save us a significant amount of time getting home, but we would be cutting it close.
In the mean time, Micah was already stressed to the max. The reality of leaving the comfort and care of the hospital had set in. The pre-game butterflies were at their peak. She was in the back seat of the car with Collin, crammed in with all 2 months worth of stuff we've collected. I was racing through West Seattle on the way to Faunteleroy (which is a horribly maintained road that rattles your teeth).
When we finally got near the ferry terminal there was about 1/8 mile line of cars waiting to go through the pay booth, which means we had no chance of catching the ferry. Instead we decided to pull in near the pay booth and I ran to ask the attendant what to do since Collin has a medical priority. He let me pay at the window and told me to drive up the exit lane. So I ran back to the car and we started up the exit ramp. The lady scanning the tickets stops us and says that we only paid for one adult ticket, not two. So I run back to the booth and buy another passenger ticket. By the time I get back to the car, the gate at the ferry ramp is down and the boat is being untied. No! Please don't go.
To the credit of WSDOT, they do take medical priorities seriously and they were able to hold up the boat while we rushed down the pier in our packed subaru with nauseous Micah now at the wheel. Thirty minutes later we were home...finally.
Oh, but what about Micah? Getting home didn't make her nerves and stomach feel better. She went down stairs and decided to take a nap in front of the toilet. Apparently, she couldn't decide whether to throw up or take a nap, so she decided that the floor of the bathroom was the best place to decide. About an hour later, when dinner was ready and Collin was due to get some medications, I got her up and she was back to her old self. After dinner, we started unpacking the mountain of stuff in the entryway and started trying to figure out how to take care of Collin without an entire medical team. We'll let you know how that goes.
Collin seems pretty comfy. We've just let him sleep on his new hospital bed in his bedroom. It was a pretty exhausting day, so we decided to let him rest. Hopefully tomorrow we can get outside and enjoy the property and play with our dog Haley.
Sunday 4/10/2011 11:30 am
All is well. We are still planning to go home tomorrow. It is hard to say goodbye to all the people we've worked with over the last month and a half. We've learned a lot from everybody here and I think they learned a lot from us (well, mostly Collin). I think we are mentally prepared for the challenges ahead of us. I don't anything could ever be worse than when Collin was storming, so I feel that we can now make it through anything. I know we've mentioned this before, but we will not let Collin's condition stop us from enjoying life. What happened to Collin really sucks. Yes, I said it. It just sucks. It's not fair. It's not what we asked for. But what are we going to do? Are we going to feel sorry for ourselves? No. Could things be worse? Yes they could. We are extremely fortunate to have a great family, and great friends. We have people supporting us in prayer that we don't even know. We have a warm home, a stable job and great medical insurance. These last 2 months have been the worst 2 months in our lives, but they have made us realize how blessed we really are.
So what is our plan for the future? We don't know. We will be very busy at home taking care of Collin, but we do promise to keep the Collin updates. They will probably start off as weekly updates and then turn into monthly updates. We will try and post pictures and videos. The Collin guestbook will be open for everyone. We really appreciate everyone who posted. I know there are a lot of posts, but we've read every one of them and they've been very encouraging during these difficult times.
Sometime in the next month or two, we plan on having a gathering down in Olympia. The goal is to see family and friends in the South Sound area and hopefully meet some people who are from the area, but have never met Collin. I'll send out more details later.
For all the C18 and T18p families, we do plan on attending a conference in the future. Hopefully we can meet many of you then.
Micah and Chet are planning a vacation for the end of May. We've earned one. Collin will stay home and will be in the hands of very capable family and friends. Unfortunately, we haven't agreed where to vacation. We can't go too far, so Hawaii or Europe is not an option. Since we both like the outdoors, I'm sure it will be a national park of some sort. Recommendations are welcome.
In the future, Collin will go on vacations with us. We hope very much that Collin improves and is someday capable of expressing his emotions. Until then, we plan on pretending that Collin is having the time of his life. We hope that Collin will be comfortable in his wheel chair, because he will be spending a lot of time in it. He will get to hang out with us outside while we work on the garden and while Dad works out in the garage and while we go to Costco and do all the things we used to enjoy doing (and maybe more).
Thanks again for all your support through all of this.
Collin, Chet and Micah (and Haley and the two cats)
Friday 4/8/2011 3:00 pm
Thank goodness we made it through Thursday with a good day! I probably would have screamed and completely lost my head if we hadn't. I know it is complete coincidence, but almost every Thursday since we have been in the hospital has been one of those day that you feel like you take ten steps backwards. We didn't this week!!! We are still planning on going home on Monday, April 11th. I believe Collin is technically healthy enough to be going home today or sooner, but I was adamant that we not go home on a weekend. Primarily because if we got home and had a question or a problem, it would be almost impossible to get hold of the right people to answer my question properly. This way we can also spend the weekend tweaking any medication issues that may arise as we see how he does on his Home Medication Schedule for the next few days. The basic requirements for Collin to go home are to have stable bodily functions. These include: stable breathing, circulation of blood, balanced electrolytes in his blood, tolerant of eating (that is formula through a feeding tube), peeing, pooping, and muscles relaxed enough to sit up in a car seat safely on the ride home. I believe he has achieved all of these things in the past few days, and has not been storming for almost 2 weeks.
Right now we have dropped one medication in half, one medication completely, and have decreased the frequency of two other medications since the Baclofen Pump surgery on April 1st. All the details of getting medical equipment at home have also fallen into place (even with the doubts from Chet the other night). Two of the things we requested are being delivered to our house today, and the other things we should be leaving the hospital with on Monday.
Chet and I will be at the Sounders vs. Chicago game Saturday afternoon while Aunt Mary and Granny hang out with Collin again (hopefully the last time in the hospital). If the weather is anything like today, it will be a wonderful day. We have clear blue skies and sunshine. Not only that, but some of the flowering fruit trees are starting to bloom around the hospital. We came into the hospital with snow, wind, rain, and storms. I love the snow, but am ready for Spring, Sunshine and Flowers. It makes me feel like the world is not falling apart, even if the government is threatening to shut down for whatever reason. According to me, as long as Collin is doing better, then all the politicians can say whatever they want for a little while. They will fight and figure it out eventually. If Collin can survive what he has, then someone should be able to figure out the budget issues they are fighting over.
As for the weekend, all I have to say is GO COLLIN and GO SOUNDERS!!!! I believe you will both win sooner or later, and maybe someday we will get Collin to a game himself (rather than the hospital).
Wednesday 4/6/2011 8:30 pm
Collin is doing well. He is off of Dantrolene which should make him less sedated (hopefully). Micah says he has been really sleepy the last few days and this afternoon he has been more awake. I had not seen him since Monday night and I can say that his muscles are much more floppy today. Maybe a little too floppy, but definitely better than being stiff.
The plan is still to go home on Monday. I'm not having much faith that all the medical equipment will be at our hose by Monday, but someone is supposed to be working on that. It is hard not being in complete control of the process, but I guess we have to trust that things are working in the background. It's kind of hard to have confidence in the system when the discharge planner tells us that the formula and pump won't be sent out from the medical supplier until the day we are discharged from the hospital. Huh?? Is Collin supposed to go without food and water until the UPS truck shows up several days after we get home?? Fortunately Micah has spoken with the medical supplier and they say they will send it out before we leave the hospital.
We added some more Hospital pictures to Collin's webpage. See this link: Pictures/Pictures.php?Album=2011_Hospital2
Tuesday 4/5/2011 12:30 pm
Collin is still improving! Although he is still in pain from the incisions and surgery, he is handling pain much better. I think he actually enjoys the miniature massage method the Respiratory Therapist does to help his lungs out. It still hurts him to cough, and I'm sure it will for awhile, but it is something he needs to continue to do. The past two days we have talked a lot about the events that need to happen before we go home. This includes setting up all the correct follow up appointments and making sure we have everything we need at home before we get there. This does not mean we are leaving the hospital tomorrow or the next day, but most likely early next week. As most of you know, this is entirely dependent on Collin. We have seen before that he can change his mind in a split-second, and therefore change our plans. Last time this subject came up was post-surgery about a month ago. We got a little too confident in Collin and how well he was doing. This time I think things are different, and that it might actually happen.
Collin is in a much different condition this time post-surgery. He is showing signs of pain, but his brain is not automatically going into the storming phases that he had before. That does not mean he is done storming, but it does show us that he can tolerate a lot more than previously. The doctors are being very careful in dropping the doses of some of his medications. We have dropped the dose of his oral Baclofen from 10 to 7.5 yesterday to 5 today. We might increase the dose of his Baclofen pump this afternoon depending on Collin's muscle tone. This will be a slow process, but we are trying to be a little more aggressive while in the hospital. That way we can get a good idea of how Collin reacts when we go home.
We are excited to be talking about home, but at the same time it is a little nerve racking. It feels a lot like when Collin was a newborn and they sent us home. We got packed up and left the hospital for the first time after having nurses and doctors taking care of him and watching every move. On the drive home you are excited, but about half-way there you realize that you are the one responsible for the living, breathing body in the back seat. You almost want to scream, "No! I'm not ready for this! I'm not really this responsible adult that you think I am. Can't you guys just take care of him? Do I really know how to change a diaper or put clothes on him? What are clothes? I haven't seen those on my son for a couple months? Do we really have everything we need? What if something goes wrong? Will I stand there dumb-founded and not know what to do?" I know I am capable and ready to take care of him, and everything will be fine, but every once in awhile all those questions go streaking through your brain. I know there will be things that we learn along the way, but we will handle it when we get there. We always have.
Thank goodness we are still in the hospital and I don't have to face those questions quite yet. For now I can let the nurses change his diapers, give him his medications every two hours, and rely on the doctors to tell me how good or bad his tone is. I know that will be our responsibility soon enough, and we will be doing it for a much longer time than two months. For now, please pray that Collin's lungs and pain tolerance continue to improve, and that he does not start storming again. Thanks and we look forward to continuing the positive updates!
Sunday 4/3/2011 9:30 pm
We have made it through the weekend. Collin has been spending the weekend sleeping and not wanting to be moved. Friday night I went with our nurse to bring Collin back from recovery, and he did not like the ride back. Even though we went slow and tried to be gentle, he started to moan and cry from even the slightest bump in the hallways. Considering he has two incisions in very painful locations, he is doing fairly well. Every time Collin tries to cough or take deep breaths, he winces and makes a pitiful heartbreaking cry. It makes Chet and I feel horrible that we decided to put him through this major surgery. We have spent the past two days being very careful in not wanting to move Collin much, and letting him sleep a ton. This morning we found out that Collin is having some trouble with his lungs. Basically because he doesn't want to cough or take deep breaths, small parts of his lungs are collecting fluid. He does not have pneumonia, but something called Atelectasis. This is actually a common condition for people whose surgery makes breathing painful. We are doing all we can to help get the fluid out of his lungs, and hopefully the most painful days post-surgery are now behind us. The next few days should be spent taking care of his lungs and letting the doctors figure out which medicines to back off on as we increase the Baclofen dose released from the new pump.
It is hard knowing that we chose to put Collin through this surgery, and the pain that he is having. However, we are very hopeful it will be better in the long term for the relaxation of his muscles and the ability to take away some of the other drugs he is on. We really look forward to getting him off of some of the drug. Someday soon we hope to see Collin's bright eyes and his muscles very relaxed and mobile.Thanks for all the prayers and support!
Friday 4/1/2011 7:45 pm (surgery description slighty updated/corrected Sunday @ 9:00 pm)
Well, we put our little boy through a major surgery. Here are some pictures of a Baclofen pump before surgery today.
As you can see the pump is pretty big, especially since Collin isn't very big. The surgery requires two incisions. One incision is in the abdomen and is fairly large to accomadate the pump that is put into a muscle in his abdomen. The second incision is in his back, just above his spina bifida scar. From the incision in the lower back they run a catheter tube into the spine beside the spinal chord to his lower neck. The tube ends at the C6 vertebrae where the Baclofen medication gets released continuously at very small amounts.
The good news is that the surgery went well. They were able to place the pump into his stomach muscles. I am sure it will look nastily huge in his gut, but that's just the way it will have to be. As I type right now, Collin is on the surgery floor recovering. Micah and I are waiting for him to come back down to his normal room. Hopefully this will happen within the hour.
This weekend will be a recovery weekend for Collin. There is no plan to change any medications over the weekend. We will just let his little body heal. Starting next week, we can start to slowly wean some of his medications.
So here is everyone's job over this weekend:
Pray that Collin heals from surgery and that his pump does not get infected. I know there are a lot of people out there praying, so we have no doubt Collin will recover perfectly.
Thursday 3/31/2011 9:10 pm
Yesterday morning Micah got a call from the Seattle Sounders FC. It was a bit odd, but they asked her if Taylor Graham (one of the sounders defensive players) could visit Collin at the hospital. She of course said yes. How could she refuse meeting a tall, handsome professional soccer player. So at noon yesterday, Taylor came and visited with Collin and Micah for awhile. Micah says he was very friendly and he gave Collin an autographed mini soccer ball, a new scarf and a bunch of other sounders souvenirs. I think it was very cool that the Sounders organization took the time to come and see Collin. I was quite jealous that I wasn't around. It would have been fun to talk soccer with Taylor. Micah showed him Collin's laughing in the snow video. Who knows, but maybe he shared it with some of the other players in the organization.
You are probably asking how the Sounders found out about Collin. It's a bit complicated, but a friend of ours had been working with the sounders earlier this week and Collin had come up in conversation. Our friend mentioned that we had been in the hospital for a while and were Sounders fans. The Sounders took it upon themselves to arrange a player to come and visit. So this is a good example of why soccer is better than football (and baseball, and definitely basketball).
Tomorrow Collin will have his Baclofen pump surgery. Micah and I have put an enormous amount thought and prayer into this decision and we've decided that Collin needs the Baclofen pump. We went back and forth and back and forth and forth and back, but came to the conclusion that this is the best thing for Collin now and for the future.
We are very, very sorry to have to put him through this surgery and we know it is a major surgery and will be very painful for a few days. He is so peaceful right now and it breaks our hearts knowing that he has no idea what's in store for tomorrow. Hopefully he heals up quickly and we can start peeling back some of the drugs that are making him sedated.
Please continue to keep Collin boy in your prayers. He's a tough little guy who has been through so much. Hopefully this will be a new start to the path leading us home.
Tuesday 3/29/2011 9:10 pm
It's been a good day again today. Collin's body is happy which makes us happy. All of your prayers are working right now. Micah and I are very optimistic people, but Collin has taught us not to get our hopes up too much. The word "home" has come up a few times today in various conversations with doctors. "Home" is not something that is going to happen very soon, but consecutive days of Collin doing well actually gets us thinking about going home again....someday....
Collin and Micah went for a nice long walk today. Collin went into his temporary wheel chair and Micah pushed him all around the hospital for about 45 minutes. The nurses let her take him off his monitoring equipment, and they disconnected his feed line and IV line. So there were no strings attached during his walk. I think it was enjoyable for both of them.
Here is another video update from tonight. It's a little grainy, but that's because I didn't want to turn on the lights.
Monday 3/28/2011 9:10 pm
Apparently Chet and I are starting to drop off the hospital and Collin update map over the weekends. We made it out Friday night to a local Irish Pub to watch the Sounder's soccer game, and then Aunt Mary & Granny came up for the weekend so we could go home again. We amazingly stayed away Saturday night and all day Sunday! Don't get too excited for news of something fun and exciting, because Sunday we worked our tails off around our yard with several friends and family. Thanks to all of them we got all the branches picked up, gutters cleaned out, and piles of brush chipped into wood chips! By the end of the day we were all drenched, filthy, and exhausted. It felt GREAT!! My body is hating me today, will hate me even more tomorrow; but it was worth every soar muscle screaming at me.
As for Collin he had a nice quiet weekend without his parents here to bug him. He has been recuperating from Thursday's events very nicely. So far he has avoided the possible repercussions from aspirating liquid into his lungs. He is still coughing up stuff from his upper airway, but it sounds like nothing is in his lungs as much as late last week. This means that as soon as Neurosurgery can get him back on the surgery schedule, with all the proper people involved, we should be able to do the Baclofen Pump surgery. We know it will be a few days, which will allow Collin's airway and coughing to improve even more. The goal for surgery is for sometime this week, but that is always questionable, depending on Collin and the Neurosurgery schedule.
Although Collin avoided surgery last Friday, he did not avoid having a procedure done. We did replace Collin's previous G-Tube with a GJ Feeding Tube. This means that the new tube feeds formula into his intestine instead of into his stomach. Chet and I had the opportunity to be in the room and watch the procedure from the bedside. It was absolutely amazing. Basically they did the entire procedure using a live x-ray machine to ensure that the tube got placed correctly. I don't think I could spend my whole day watching a black and white screen of x-rays, but it was so fascinating that I would consider it, and would definitely choose it over the Poop Business that Chet and I were going to start. Collin does seem to be happier getting fed into his intestine rather than his stomach, but he has also been pooping rather regularly the past several days. So as the question always is, did the change in the G-Tube or the pooping regularity make him happier? Which came first, the chicken or the egg? I don't think we will ever get a true answer to either question. All I care about is that Collin is happy and comfortable, and that chickens give us eggs to eat at home! So I will leave you all to debate the unanswerable questions of the earth for now. Let me know when they come up with a long-standing answer!
Friday 3/25/2011 9:30 am
Well, we've passed the 2 month mark. We've spent one month at Mary Bridge and one month at Seattle Children's. One thing we've learned through all of this is that the food at Seattle Children's is not good. The staff at both hospitals have been fabulous, but Seattle definitely has a much bigger team of people working for Collin (at least that is visible to us). It's also nice that we see the same group of people almost every day here, where at Mary Bridge we never knew who we'd see each day. So in my opinion, if I had a child that needed some basic hospital care I wouldn't hesitate to go to Mary Bridge (great people, great facility). But for complex conditions, I'd have the ambulance drive right through Tacoma and head to Seattle Children's.
Things change quickly. Micah's update on Wednesday was happy and upbeat and things were going really well. Just a few hours after her update, things took a sharp turn for the worse. Collin vomited and aspirated some of that liquid. Micah had already gone home, so there wasn't anyone in the room when it happened. We are pretty sure that the nurse caught him quickly because his oxygen levels were setting off the alarm. We don't think his oxygen levels were dangerously low, but the fluid in his lungs have set us back a bit. They were able to suction out most of the liquid from his lungs, but his airway was irritated and he had trouble breathing Thursday morning. It was an awful raspy, choking, gurgly breathing sound and he was struggling to get enough air and oxygen. At one point Thursday morning his breathing was so bad and his fever so high that they called in the "Rapid Response" team and they were ready to rush him up to the PICU. Fortunately things settled down and they were able to clear out more liquid. By the time I showed up at 11:45 am, things had calmed down. He still sounded raspy, but his oxygen levels were okay. Micah and I took turns holding him and then we put him in his wheel chair. He sat in his chair for about an hour and I think this really helped his lungs. The rest of the day Thursday was very peaceful. Collin's heart rate and body tone were the best we've seen in a long time. I think it is because he is off his foods (they haven't fed him since he vomited), doctors told me they doubled his Dantrolene. Those darn doctors keep on muddying up my food theory.
Micah and I left to go back to the Ronald McDonald house at about 9:30 pm. At about 11:00 pm, the nurse called and said they were worried about Collin's heart. His heart rate was in the 80's but then would suddenly dropped to the 40's for a short period. They thought that maybe he was having heart arrhythmia. Great. That's all we need now is a kid with a bad heart.
Long story short, Collin's EKG was just fine. We do not have a kid with a bad heart. In fact he has a very good heart.
No Baclofen pump surgery today. It was cancelled because Collin has to fully recover from the liquid in his lungs first. Maybe sometime next week, depending on Collin and the Neurosurgery schedule.
Collin' will be getting a new type of G-tube today. They will put in style of tube that puts the food right into his intestine (jejunum). It won't require any sedation or any type of surgery to place. They will just take out his existing G-tube and put this new one in. The hope is that it will help keep him from vomiting up his lunch (which probably tastes just as bad going in as it is going out).That's all for now.
Wednesday 3/23/2011 9:00 pm
Thank goodness for red-headed nurses! I haven't had a red-headed nurse I don't like (and yes I'm a little biased since I'm a red-head). We had a new one today, she was fabulous and adored Collin even though she had never worked with him before. As many of you know there is something special and endearing about Collin even when he is in the hospital and not his true self. He could sleep for 100 years and charm a million people in the process (and yes I'm biased because I'm his Mom).
As for today, it ended up being a mildly eventful day. Collin was uncomfortable all morning, and was starting to frustrate me with his whining, which he would not stop no matter what I did or did not do. I went to lunch and when I returned I happened to notice one of Collin's front teeth looked different than normal. I touched and it moved! I immediately almost panicked. Of course I calmed down, and had the nurse page the doctor and dentist. The dental team came and pulled the tooth since it was a possible choking hazard (especially before surgery). Collin was immediately comfortable and back to the peaceful boy that I love to see and hang out with. The moral of the story is that Collin had his first baby tooth pulled, and Chet if you notice an abnormal looking tooth, please mention it before surgery!
The other news of this week is back to the never ending subject of poo. Not only have I learned that Chet could go into business for making Collin poop, I could join in the endeavor of accurately guessing how much his poop weighs. For anyone that spends time in the hospital, you know that nurses and doctors keep a record of how much food goes in a person, and also how much food comes out. This means they have to weigh diapers before throwing them away. In the 2 months we have been in the hospital I have developed a gift of estimating Collin's poop amounts. Obviously this was not my life long dream, and wish I could otherwise find employment, but it will have to do for now. I guess that it just shows how much we love our little boy. We are willing to go into the poop business to make him happy and healthy!
Tuesday 3/22/2011 9:00 pm
Collin had another okay day. Micah says he had a higher heart rate most of the day, but his body is much more relaxed. When I got to the hospital after work, Collin was relaxed and his heart rate was about 120. I held him for a while and he was very happy. It feels good to hold him, especially when his body is relaxed. After I put him back in bed, his heart rate was down to around 100. The nurse walked in and was shocked that his heart rate was so low (it was her first day with Collin). I told her I have the magic touch (which I do). Speaking of do, I am the doo doo doctor. Apparently, I have the special ability to make Collin poo. For some reason, I have had success at getting Collin to relieve his bowels. It's just a matter of positioning and massaging the right place on his tummy. (The magic spot is exactly 1.2 cm right of his belly button and 3 freckles down from his rib cage.)
In all seriousness, Collin seems to be getting better in very small steps. There are moments when there is a small glimpse of Collin inside that fragile little body. Even through all the drugs, there are times when he seems to hear us or see us. It's hard to explain, but we sense that there is some healing going on inside his head. We have faith that God is healing Collin and we appreciate all the prayers and support!
Monday 3/21/2011 2:30 pm
Hello again after the weekend. It is amazing to me how quiet hospitals get on weekends. Doctors just seem to disappear for the most part, and so Chet and I took advantage of the schedule to get home again to play soccer Saturday night. We left Collin in the good hands of Great Aunt Mary, Granny, and his doctors and nurses that know him very well at this point. Mary did not get the chance to play accupuncturist on Collin, but someone else did today. Several people will probably be surprised, but I actually stayed in the room! No it wasn't a big deal, partially because she didn't use anything that really looked like a needle. Instead, the doctor used something that looked similar to a thumb tack, but infinitely smaller (almost invisible). I was brave, and figured since Chet wasn't here I better stick around and face my fears. I still say, thank goodness she didn't try putting them on me, even though there is only a few. Now we don't think there will be an immediate change, and it will definitely be difficult to say if it is helping since Collin can't communicate with us that he is feeling better, but I hope we see an overall slight improvement in his discomfort level.
I will make today's update a little longer than most of the recent ones. We haven't been as specific because things have been ever changing for the plan this week. Late last week there was talk of doing Baclofen Pump surgery today (Monday), however, that got changed to doing the surgery on Friday. We also started Collin on a new drug Dantrolene that is supposed to work very specifically to relax the muscles. We had not tried this drug previously because it can have side effects on the liver, which we wanted to avoid considering that Collin has been recovering from liver failure from when he was first admitted to the hospital almost 2 months ago. His liver has been very stable for quite awhile, and the doctors felt it was safe to try it as long as his liver enzyme numbers were still stable today after the weekend. They were still fine, so it doesn't appear to be having any adverse complications yet. The nice thing is that Collin's muscles were much looser and relaxed almost the entire weekend as far as we know, and his blood work from this morning showed that his muscles were not breaking down like previously. Although the Dantrolene is helping, it isn't changing the current plan for surgery of the Baclofen Pump on Friday. This surgery will involve several people, primarily the Neurosurgical staff. Basically what a Baclofen Pump does is directly insert the medicine Baclofen into the spinal fluid, which then helps relax the muscles immediately, rather than having to take the medicine orally and have it relax the entire body, including the brain. This may help with allowing Collin to be less sedated, while targeting his muscles more specifically. It is a little nerve racking, because it is another surgery, and is not very commonly done on individuals with Spina Bifida. It is also something foreign and mechanical inside of his body. Both Chet and I would rather have avoided a Baclofen Pump, but at this point it appears to be one method that may truly be able to help Collin keep his muscles relaxed long term. It will still be a long road ahead for Collin and us as parents, but the hope is that eventually (some day far in the future), he may not need as much of all of the medication he is on. We don't like filling his system up with drugs, but for now it seems to be the only way to prevent his brain and body from further damaging itself.
We love you all and look forward to the day that Collin will truly say thank you himself!
Friday 3/18/2011 9:30 pm
Collin has been a little better today. Not great, but better. We increased his new drug Dantrolene a little today and that may be helping. Hopefully he has a good night.
Micah and I got a visit from Micah's family this evening. It was good to see them. We tried to eat dinner at the RAM, but didn't realize that there was a UW basketball game on the TV. It was a bit crowded so we went to Johnny Rockets instead. Happy Birthday tomorrow cousin Jeff!
I asked Collin if he wanted to watch the end of the UW basketball game, but he didn't seem very interested. I think he is more of a soccer fan.
Here is a little video update from earlier today.
Thursday 3/17/2011 6:30 pm
Happy St. Patty's Day Everyone!! It has been a beautiful sunshiny day here in Seattle. A few passing clouds of rain, but mostly just sunshine for once. I also had the priviledge of getting away from the hospital for a couple hours to help someone get home from the airport this morning. It was a very pleasant drive and I hope our friend is now resting and catching up from the very adventurous trip she had to Japan and back. She was safe the entire time, but is glad to be home now. At least I felt like I could be productive and actually do something for someone who needed help. Collin on the other hand, I am unable to help today or any other day. At least I am here for him when he decides that the time is right. For now, I will be a Mom and hope for the best.
We are literally trying everything. We have changed his formula, and added some things to help his digestion and gas along, in the hope that we can eliminate his gut as a major irritant (hooray, we finally got our way, even if it doesn't work). We are also trying a new drug called Dantrolene, as long as his liver function is still good. The suggestion for accupressure/ accupuncture was also made, which we may as well try. Some people may or may not agree with this, but my philosophy is that it has worked for 100's of years for some people, why not try it at this point. I wouldn't be able to let anyone put needles into my skin, and I won't be in the room for Collin, but if it helps, HOORAY! I just don't like needles, to put it lightly. Anyone in my family can attest to that.
We love you all, and hope you have enjoyed a beautiful day as we get closer to spring. Which reminds me, I have a few friends that I need to email happy birthday's to before I forget. We are still hanging in there, getting away when we need to, and trying to make sure the world doesn't go to pieces without us. Obviously we can't save the world, but we sure would like to try if we could. Chet might be saving the world without me. (I never really know for sure when he goes to work in the morning. Maybe he's Superman and just hasn't told me, oh but then he would have fixed Collin by now if that were the case.)
A friend and amazing doctor told me today, "Collin will get better. He is not the worst case I've seen. The best medicine is time, which doesn't make the difficult days any easier.... Also remember, his stomach sounds like a drum when it is full of air."
Wednesday 3/16/2011 10:30 am
Apparently we are slowing down on our daily updates. Part of the reasoning is that Chet and I made it to the opening game of the MLS Soccer Season: Seattle Sounders vs. LA Galaxy last night! It was a little bit of a fiasco coordinating my Mom to hang out with Collin, me to get downtown, Chet to get downtown from work, our friends to get downtown from Bremerton all about the same time, and all of us to get back to our homes. However, we did it safely, and had a fabulous evening (even though the Sounders lost). It was a well played game for both teams, and we thoroughly enjoyed the company and the excitement. Side note for the future: do not take the public bus system immediately after a game, unless you like being squashed (litterally) like a sardine in a small confined space with lots of people you don't know. Chet and I both thoroughly washed our hands and then took showers to make sure we didn't share any germs with Collin or the hospital staff today.
As for Collin, he is doing significantlly better, but still not where we want him to be (which is comfortable the majority of the time). We expect Collin to have his times of discomfort for whatever reason, we just don't want it as frequent as it is right now. As Chet mentioned, we doubled his Valium dose over the weekend, and are using that to turn to as an extra help instead of Morphine when Collin is uncomfortable. We also increased his dose of Baclofen yesterday, and a Baclofen Pump is being reconsidered for sometime in the next couple weeks.
Besides increasing his medicines, Chet and I would like to find a way to clearly elimate his digestive tract as a contributing irritant. To put it plainly, we would like to make sure his poops and farts aren't a major contributing factor in all of this hullabaloo of discomfort. I've said many a time to the doctors, that the most difficult thing in 4 years of Collin's life was finding the right balance for his digestive tract. If there is anytime to conquer that mountain and put it to rest, now is the time. Don't get me wrong, we have all tried very hard in the past 4 years, and now the past 4 weeks to get the balance right. Our current plan with the doctors is to look into this a little more thoroughly. Maybe we will change the formula he is on, or see if there is something that we are all overlooking. We will probably never get it 100% right, but I want it better than it is right now. That is what we all want for Collin, to make things better than they are. Thanks for all the prayers and thoughts!
Sunday 3/13/2011 8:30 pm warning: This update is quite poopy. If you don't like poo, don't read :-)
Things have gotten better. Friday, Friday night and Saturday morning were not good for Collin. He was very uncomfortable and was very distressed. He'd been grunting and was very tense. On Saturday Micah and I pushed very hard for the doctors to look at his digestive system because we had a "gut" feeling that Collin's gut was hurting him. They agreed to do an X-ray to look at his digestive system. Well it turns out Collin had some unusual things going on in his intestines.
First, they found an unusual foreign object inside Collin. The radiologists were unsure what it was. Once they described what they saw, Micah and I immediately knew what it was. It was a spring clip that Mary Bridge used to install Collin's G-Tube. We were told by Mary Bridge that the spring would come loose from the internal stitches and would pass through his system within a few days. Well that was 3 weeks ago and apparently it hasn't passed. It turns out that Seattle Children's doesn't use internal springs for their G-tubes, which is why they were baffled. It is a little disconcerting that the spring hasn't passed through his system. The doctors aren't too worried, but I question if this is bothering Collin. We will press the issue more tomorrow.
Second, Collin's colon was full of air (or as I put it "Collin's Colon was Swollen" (try saying it quickly)). This can be very painful (so we are told). At about 8:00 pm Saturday, Collin had a very nice poo and released a lot of gas. Nurse said that right after he relieved himself he had a nice little smirk on his face and was quite happy afterwards. In fact, since we have been putting emphasis on clearing Collin from poo and gas he has been drastically better. He has been really calm all day. He had another spell today for about 40 minutes where he was grunting, grinding teeth and arching a bit. I repositioned him and massaged his gut to try and get him to do something. His stomach was making a lot of noise. Then he had an explosive event. Afterwards, he had that little smirk on his face and was very happy again.
Also on Saturday they increased his Valium. Micah and I are convinced that his relief was from the gas and poo, but the Valium might also be helping. Maybe the Valium has relaxed him enough so he can release his gas. Whatever it may be, Collin is once again happy.......for now.
Friday 3/11/2011 9:00 am (Update 11:30 pm)
I think Collin somehow knew the world was going to fall apart, and that he figured "Why not just sleep through it all?" Our philosophy comes from the fact that Collin got admitted the day or two before Egypt started rioting. Now Japan has had the "Worst Disaster in Japan's history," according to the news channels. I am half joking when I say, "Oh, no it is the end of the world." It just seems kind of weird that Collin admits himself to the hospital and has a horrible month that coincides with several historical events. So don't be surprised if the world truly does come to an end soon. We will just claim that Collin told us first! (Just kidding, sort of.)
As for Collin status, he is still storming periodically throughout the day. We are actually going to try to determine if pressure is rebuilding up in his head. There is the possibility that the surgery didn't provide enough long term relief from all the fluid in his head. The neurosurgeons don't think that is the problem, but no one knows for sure until we re-test the pressure. The neurosurgeons came in the other night and said they were actually willing and ready to get a post-surgery pressure reading, as long as he is has not been storming all day or for at least 2 hours. The plan is to try to do this test pressure this afternoon at some point, Collin willing. The nice thing is it does not require surgery this time. Basically all it will be is sticking an IV type needle inside the reservoir they left inside the top of his skull. It sounds strange and hard to understand, but that is pretty much what it is. They use very similar needles and local anesthetics as when they draw blood or place an IV, but the difference is that this needle is attached to a pressure manometer to read the fluid pressure.
Please pray that Collin has a good day and doesn't storm for at least a few hours today. Otherwise we will have to wait to do the procedure another day. We just want to know one way or another if it is the fluid pressure in his brain. Thanks for all the prayers. This is hard for all of us, but we know everyone praying truly is getting us through.
(Update 11:30 pm)
Another extremely frustrating day. Collin has been grunting and arching alllllllll day. Getting really old. We don't blame Collin and we don't blame the staff at Children's. We are trying to get him comfortable, but we can't just pile on drugs. We need to be methodical. If we do too many things at once, then we don't know what helped and what hindered. Here's what we did learn today:
1) Collin's brain pressure was okay. It was about 18, which is considered normal. Neurosurgery drained his brain fluid to about 6, which is on the low side of normal. We have seen no change in Collin's condition so it does not appear that his brain pressure is causing the storming (like we thought before).
2) Monday he will go back into the operating room under sedation to determine his base line brain pressure (todays test was done while he was awake). Based on today's test, we expect normal brain pressure.
3) We are not sure why Collin is so uncomfortable. Maybe someday he can tell us, but for now we have to solve the mystery ourselves (which is not as much fun as playing "Clue" and is not as satisfying as watching "House" or "CSI" where they always solve the problem. Basically reality sometimes stinks. I guess that's why people write books and make movies. Maybe someday they'll make a Hallmark made-for-television series about Collin. I wonder who would play Chet, Collin and Micah?...)
Well it's late and we are bit nutty (which at this late hour reminds me of a line from Austin Powers).
Until next time!
Wednesday 3/9/2011 9:30 pm
Sorry no big update today. It got late on us and we are ready for bed.
Collin did get a hair cut today. It is a very unique haircut and it actually looks pretty stylish. We will post some pics for tomorrow's update.
Tuesday 3/8/2011 7:15 pm
Oh, how I wish that things had stayed as they had before the weekend! So yes, the surgery from last week helped, but no it wasn't a cure all for Collin's storming and arching. He has definitely proven to everyone that he likes roller coaster rides, even if they are just an emotional roller coaster for his parents, doctors, and friends that care for him and miss him. He had a good day yesterday, and so-so today. He has had some storming, and some arching today, but not as bad as a couple weeks ago, and not as bad as the weekend. Everyone at the hospital now knows that this will take time, and a careful tweaking of medications from here on out. We want him to stay comfortable and manageable, while also being awake and alert as possible. There is no magic recipe to attain this, only a million different combinations and methods to try, and everyone has a different philosophy of how to get there. Having the patience to try to achieve this magic combination for Collin is what is set before us and the doctors, and we have learned that we need to do this carefully one medication at a time. We think we know which medications to use at this point, but getting the right recipe is the difficult and time consuming phase of this journey.
Part of the frustrating aspect of all of this is that, although we do daily updates, not much has really changed over time. We move forward and things change from day to day, or day to month, but there has been very little change in the grand scheme of things from a few weeks ago. The facts remain that, Collin is still storming (although differently and more controlled). Collin is still arching and tensing (although less frequently and intensely). And this is how it will be for a long time to come until the storming "wears itself out" and we can consider backing off on the drugs that control it (as a doctor or two have told me over the past month). So as you follow along with us, although things change, they don't really at the end of the day, or month, or however long this road may be.
Monday 3/7/2011 2:30 pm
Chet and I slept at the Ronald McDonald House last night, and came into Collin's room around 7am to find him with a stable, low heart rate!! Hooray!! One step closer to figuring out what happened and getting him back to where he was on Friday, before the weekend. We also found a very large messy surprise exploding from his diaper. To say it mildly, Collin had pooped! Collin and his black and white dog Scout Jr. got a bath. It took a bit of work to avoid making a bigger mess than was already made, but when it was all said and done Collin was cleaner and happier. The storming may have been partially due to not pooping, or one of the other many possibilities we talked about with the doctors over the weekend. Mainly we are just happy he is much more comfortable today. The prayers helped!
There is also something else I've been meaning to tell all of you about. Many of you know about, or are members of, the Chromosome 18 Registry and Research Society. A couple weeks ago a fellow member had asked me a question regarding the Annual Chromosome 18 Charity Golf Tournament that they hold each May in San Antonio, Texas. This newly found friend and fellow member of the T-18p portion of our chromosome family reminded me that they have been fundraising for the annual golf tournament. The Tetrasomy 18p families had been fundraising towards a goal of $1,000 to sponsor a golf hole at the tournament. After one week of fundraising, they surpassed their goal!! They will be receiving donations until May.....and would like to earmark those towards a new goal. They had discussed making a new goal a SECOND golf hole to sponsor, this one being dedicated in honor of Collin. Chet and I discussed it, and agreed that it would be a wonderful thing to feel more involved with the Registry, and also be very honored to have people thinking of Collin while golfing this spring. I know it has been awhile since I was first emailed regarding this, but feel that some of you would like to know about it and if you would like to donate, you could. The Chromosome 18 Registry community and web site has been a wonderful resource from the time I was pregnant, while Collin was little, and has been amazing this past month as well. Chet and I have not been very involved with the Chromosome Registry the past few years because we have made other choices, like working on our house and going on vacation, but we have always been thankful for the registry being there as a resource and a support. If you would like more information on the tournament this year, click here, or last year's event, click here. Thanks, and I hope you all are having a wonderful day!
Sunday 3/6/2011 8:30 pm
They started Collin back on the Propranolol last night after spending the day trying to wait on Morphine or Ativan to work, and break him out of his brain storming. The Propranolol (beta-blocker that stops the heart from working as hard) finally kicked in around 10pm. The difficult thing is that it brought his heart rate down, but didn't stop the fluctuations that coincide with the storming. We don't know what triggered this storming to start again. There are many possibilities, but it really doesn't matter what started it. We just need to break the cycle of the brain storming from feeding on itself. Until then, we will continue to try to combat it with the medicines that worked before. So far we haven't been very successful. Chet made the comment this afternoon that, "Isn't giving him Morphine just like a band-aid? It doesn't really solve or treat the problem." This is true, but if you want to look at in this way, we need to stop the "bleeding" before we can truly find and treat the problem (Note: Collin is not bleeding.).
Hopefully tomorrow we will have some better answers. At least for now, Collin's heart rate is down, and we are working our way back to figuring out what combination of drugs is going to work best for him in the long run. If we can also figure out and treat the problem that triggered all this, so much for the better. Who knows, but we will continue to wait and be patient. The nice thing is that these storms aren't as bad as they have been in the past month (not yet anyway). Thanks for all the prayers. They are greatly needed right now as we find ourselves back in the same place as a couple weeks ago.
Saturday 3/5/2011 6:00 pm
Great Aunt Mary and Granny have come to visit! What a wonderful morning it was. Collin was wide awake, looking around, moving his head and arms slightly, and had even calmed himself down very nicely after two short episodes of high heart rates without any arching or tensing. Chet and I were supposed to both go home and work on the house while Granny and Mary hung out with Collin. However, I decided to remain at the hospital since Collin was a little different from the past few days, and might be starting to go into his storming. This afternoon, Collin has shown us and the doctors that he has no problem going back into his storming. We went to eat lunch at the cafeteria, and arrived back in the room to find Collin with a heart rate in the 200's, which had been there for about 5-10 minutes. He has been there since. The arching and tensing isn't there like before, but his heart rate just doesn't want to come down no matter what we do.
It is amazing how quickly our bodies can change their behavior. I think Collin just likes being in the hospital and faking all the doctors out. He was seeming to make such good progress, and had everyone so hopeful. I am not usually a glass half-full kind of gal, but I warned Chet earlier this week that I didn't know if the improvement would last. The strange thing now is that Collin's actions are similar, but different than all the weeks before. At least Collin is showing the new doctors how easily he can change his mind, and what exactly his storms can look like. I'd rather have him do this now, than in a week or two when we are at home.
I just don't understand it. All I know is that I feel like all my knowledge and experience from the past month has been thrown out the window and fed to the wolves. Please pray as we continue to fight whatever is going on, that we find a balance of medications that work best for him. At least Chet has had a productive day at home with a group of guy friends that were willing to help us with something for when we go home.
Friday 3/4/2011 10:00 pm
Collin has had a very quiet and relaxing day again. He sleeps most of the day, but has times when he is awake and is looking around (like right now). No real purposeful movements of his hands or feet, except when something hurts him. For example his left bicep is very tight. If I try to rub it, his arm flinches and his whole body jerks. However, he immediately calms back down. I think this is a good thing in my non-medical opinion. It seems like his sympathetic nervous system is working (telling him to react to pain), but then his brain is telling his sympathetic system that it is okay to stop. I think before when he was storming his sympathetic system would tell him to react to pain, but his brain was not stopping the reaction and he would clinch his whole body, arch his back and his heart would race for long periods of time.
Neurosurgery says to give Collin about 10 days before we can really feel confident that the brain surgery is working. We do know that there was a drastic change of behavior immediately after the surgery. There is still a chance that the brain will repressurize, but for now we are extremely satisfied. Collin's storming episodes were extremely hard on his whole body. It was destroying his muscles and putting a lot of strain on his kidneys. It was extremely difficult for us as parents to witness. I pray that we never have to see them again.
Today was a very busy day for us. We met with pretty much all the different departments throughout the day. A vendor also came in today to show us some options for wheel chairs. I think we've decided on a wheel chair called a "Quickie Iris". We are asking to get bigger front wheels (I asked about putting on skiis...they didn't seem amused). This wheel chair is nice because the seat portion is removable. We'll see if we can adapt the seat to other things (attaching it to a quad or snowmobile probably isn't a great idea, but it has crossed my mind). It could be nice to adapt to something like his baby jogger (stroller or bike trailer). I'm sure it's not in the user's manual, but what's the worst that could happen...
I probably shouldn't share this story, but I think I will.
About 15 years ago I was playing softball at Yauger Park in Olympia. The ball fields are a bit lower than the main concession area and there is a pretty steep dirt hill between the concession area and the bleachers below. There was a young kid (between 10 and 13) in a motorized wheel chair who appeared to be mostly paralyzed, but had enough control of his hand to control the joystick. I remember watching him get a running start at the concession stand and go barreling down the dirt hill towards the bleachers. I watched waiting for him to either flip the wheel chair or crash into the bleachers. He did neither. Instead, he got to the bottom, turned around, drove back up a concrete path, turned around and went barreling back down the dirt hill. He did this most of the ball game. I specifically remember thinking to myself, he's gonna break his neck where are his parents? (Please don't think I'm insensitive for this next part) But then I realized, he's already paralyzed and he's obviously having the time of his life. Good for you kid!
So the moral of my story is...well I'm not sure, but that memory in my life is still very clear, so it must mean something to me. Collin may be much different from here forward, but we are going to have fun. Obviously we are not really going to put his life in danger, but we will have adventures. Regardless of what may be, I believe deep inside Collin will still enjoy the snow and the ocean, even if he can never express it. We of course will always have hope that he will be able to express his joy again, but it won't stop us either way.
So GO COLLIN!
Thursday 3/3/2011 2:00 pm
Originally meant to be: Wednesday 3/2/2011 9:00 pm
Today has been a nice quiet day around here. Collin has been resting and relaxed all day. No arching, no storming, just sleeping comfortably for the first time in a while. He has been so peaceful that they actually had to stop giving him his Propranolol that helped control his heart from skyrocketing into places we didn't like. He was actually pushing the low limits of where they want his heart rate to stay. It made us nervous at first, because the last time doctors decided to stop giving this drug to him he went back into his storming. He hasn't yet, and if he does, they can start using the Propranolol again (we know it works). They reduced his Clonidine dose a little as well, and are talking about weaning him from another drug as long as this calmness continues. We are very thankful for the peaceful rest right now, but also trying to be cautiously optimistic about how long it will last. Collin knows how to turn the tables on us quickly if his body so determines. I pray that he continues on the path he is on right now. Thanks for all the prayers and words of encouragement.
Thursday 3/3/2011 2:00 pm
I apologize for not getting this put onto the internet last night. Right as I finished writing and saving it, the nurse walked in and informed me we were moving to a different room (8:30ish last night).. Apparently this is a very busy time of year for hospitals, and needed Collin's single room for an individual that had a contagious isolation measures (Collin may be complicated, but not contagious). Although it would have been nice to stay in the other room Collin is pretty stable and not storming right now, so we can't complain. I figured that I'd rather help move Collin at 8:30pm, rather than have the nurse have to move him & all our stuff later. Collin is now sharing room 2141 with a very young new born boy, who is very quiet and sweet. I chatted with the father this morning for a few minutes. It is amazing the wonderful people you meet when going through a challenging time with your child. There are constant reminders that we each have unique bodies that present challenges to doctors every day. Besides sharing a room it has been another quiet day of relaxation around here for Collin. Thanks for the love and support!
Tuesday 3/1/2011 9:00 am (Updated 5:30 pm)
Not sure how long of an update this will be, but will try to summarize concisely the recent chain of events. Chet and I still have a couple questions in our minds, but this is how we are understanding this past month's chain of events, and what we have recently learned about Collin's head even previous to that.
Collin has always had hydrocephalus. When he was about a month old we thought we would have to do surgery to place a shunt to drain and balance the extra fluid. However, it miraculously stabilized itself, and we didn't do the surgery (even with the still large ventricles). We believe now (as of yesterday), that the pathway from the brain to the spine for the brain's fluid was most likely blocked. However, his body found a way to delicately balance this blocked fluid, without having to need a shunt. A month ago he had a series of unfortunate events that made him really sick. First he got the Para Flu 3 virus, which may have caused the 106.5 fever and long seizure. This in turn may have triggered the body to over react to itself (HLH syndrome we talked of earlier), which caused the organs to start to fail. Somewhere in all of this there was also a lack of oxygen supply to the brain, which caused some brain damage. Now the delicate balance preventing the hydrocephalus from being a problem is gone, causing the pressure inside his brain to increase.
That brings us to the present moment. We have now relieved the pressure in Collin's brain from the procedure done yesterday. The Neurosurgeon was going to do a test pressure of the spinal fluid, via the spine, to see if it was high, but realized shortly before surgery that doing this wouldn't give an accurate reading due to the blockage of fluid between the brain and spine. This blockage was discovered on the MRI at the very last minute. Instead he needed to drill a hole in Collin's head and measure the pressure directly. Since he found that it was a high pressure, he was able to scope down through his brain and basically poke another hole in the bottom of Collin's large ventricle to help drain the fluid and alleviate the pressure. After the surgery the neurosurgeon gave us some pictures of the procedure. We now have pictures of the inside of Collin's brain. Sorry, but we won't post those.
Some questions you may have:
1)Why wasn't this seen earlier? The neurosurgeon saw it on the MRI very shortly before surgery, so it was very easy to miss in the past month. CT's do not show this part of the brain, and the CT's supposedly looked the same as all his previous ones. We even did a spinal pressure test early on during recent events, but it came back slightly high, but mostly normal.
2)What are some of the symptoms of the hydrocephalus? They are mostly the same as the symptoms of his storming and arching, but in a much smaller quantity. So basically it is very hard to know at this point how much of Collin's behavior is due to what. We have to see how he is once he recovers from yesterday's surgery. We may see a slight improvement in his arching and storming, or we may see no improvement at all.
So now it is another waiting game. As we know, and now also all of you, Collin has always been a little complicated, to test our knowledge and understanding of him; a little slow, to teach us patience; and special to our hearts, mostly just to teach us to pray and trust in the Lord (which is very hard to do at times right now).
On a lighter note, some of you may know that Collin has had pretty cool and stylin' hair in the past month. The PICU nurses claimed he had the best hair in the unit, and his 'phomawk gave him character. Well, sad to say he has a very bad haircut right now, and we are trying to decide which way to go to fix that. Should we shave it all, or try to work a way around it? I think the plan right now is to shave, but one never knows for sure what is to come around here!
(Updated 5:30 pm)
Today has been a very quiet day for Collin. He has been very relaxed all day. We've been waiting to move out of the PICU, but the general floor is completely booked. Looks like we (Collin) will be sleeping here again tonight....Wait...we may have a room...we are moving
We are trying not to be too optimistic, but it really seems that the brain surgery has made a significant change in Collin's physical condition. He has not arched his back at all today. His arms and legs are very relaxed. His fingers are not in a death grip. And his heart rate has been well below 100. In fact, it has been a little too low. He has not been sweating all day like he has the last few days. Besides his horrible haircut and wicked incision, he looks so much better. His face is noticably swollen, but is as expected after surgery. He has been very sleepy all day and I (chet) was able to hold him for quite a while. It is still too early to say for sure (which means things could change back at any time), but this may be an answer to many of our prayers. If this surgery fixed his "Storming", then it solves many problems. Most importanly, we might be able to avoid a Baclofen Pump and it's related surgery and complications. It also is a step closer for us to go home.
If Collin can keep from storming, then we can start cutting back on his medications. Hopefully, we would be able to see more responsiveness from Collin. We still have to remember that Collin has significant brain injury, but this would definitely a step forward.
We are now in room 2144. We should be here a while.
Monday 2/28/2011 2:00 pm (Updated 2:50pm)
Quick update. Collin is in surgery. The original plan was as follows:
Do a lumbar puncture to determine Collin's head pressure.
If the pressure was high, then they would install a shunt.
If it was slightly high or normal, they would go forward with test dose of Baclofen.
New plan (and it is complicated why) is:
Give Collin a bad haircut.
Drill a hole in his head.
Check head pressure.
If pressure is okay, fix hole and then proceed with Baclofen test.
If pressure is high, video scope his brain to see if an alternate procedure can be accomplished to relieve pressure.
If video scope is not okay, perform shunt procedure.
We are not sure what room we will be in after surgery. We'll keep you updated.
Good and Bad News:
Collin's pressure was much higher than anyone expected. Normal is about 20, Collin was at 35. This means we see if he can get the alternate procedure which does not require a shunt. This may actually turn out to be a good thing since it might be a reason why Collin is having all this storming. Just got the phone call. Looks like NO shunt for Collin.
Surgery went well. Collin just needed the surgeon to poke a hole somewhere in his brain. The process is called "Third Ventriculostomy". Its complicated so do a google search or this link.
We will do a more thorough update as to why all this took place, but for now we are getting hungry!
Sunday 2/27/2011 3:00 pm
Another day in the life of Collin at the hospital, another day of sleeping, fluctuating heart rates, and the nurses trying to figure out how to take a good blood pressure measurement. They even tried the old fashioned style (unautomated), where you have to actually listen and feel the pulse. That didn't work either. Suffice to say in the last 24+ hours they have found out that Collin likes the sound of his alarms, has a difficult time getting a good blood pressure, and doesn't like to let his oxygen sensor on his toe get a good signal to show his oxygen saturation. In general, Collin just likes to be difficult in some form or another. Thank goodness today has been a quiet day, because tomorrow may not. We saw the neurosurgeons this afternoon, and confirmed a couple things, and decided how to confirm a couple more things. One, no one believes from Collin's actions before all this, or the MRI images, that he has a tethered chord. Two, it is unlikely, but impossible to tell for sure from the current information if his hydrocephalus would require a shunt. The next method to determine if he does need a shunt would be to remeasure his Spinal Fluid Pressure. This is best done in the operating room under controlled conditions. This means that is where Collin will be off to tomorrow (Monday) at some point. If his Spinal Fluid Pressure is low or normal, we won't do a shunt and instead do a test trial dose of Baclofen and see how his tensing muscles react. If his Spinal Fluid Pressure is high they will place a shunt while he is already under sedation. In other words, Collin will have an interesting day tomorrow. For us, it will be a lot of waiting to see what our little boy comes out with (hopefully not a bad haircut from a shunt, but rather a tiny prick in his back from the Baclofen injection).
Saturday 2/26/2011 8:00 pm
Pretty well settled in at Seattle Children's Hospital! Collin had a very nice trip with his crew up to Seattle. We were told the bumpy ride lulled him to sleep, helping to relax his slightly elevated heart rate that he has been having the past couple days. Nothing like his previous bad "storms", but not his relaxed self we saw earlier this week. Chet and I were unable to ride in the transport vehicle with Collin, but we know he was well taken care of and got here pretty much at the exact same time as us. It was a little hard to leave our wonderful staff at Mary Bridge, but know we made the right decision to make the move. He has a room to himself and we had a steady stream of doctors in and out this morning and afternoon, which was nice to get that all taken care of right off the bat considering it is the weekend. I know there will be more in the days to come, but I think we got the majority taken care of rather quickly. The doctors and staff here agree that Mary Bridge did a fantastic job of treating Collin and setting him up for success for the future, and that at this point the best therapy is time and tweaking to figure out what is best for Collin and us as a family. They also understand that we are ready for a new set of eyes, ears, and hands to be treating Collin. Chet and I were saying this afternoon how Collin has hopefully made it through the worst part, and now Seattle Children's gets to finish tweaking the details and figure out the exact future for Collin. Part of this future includes re-evaluating his neurosurgical issues, and what should or shouldn't be done. There are still questions concerning his hydrocephallus (large brain ventricles), whether or not to do a shunt, is there or isn't there a tethered chord, and the question of whether to do a bachlofen pump or not. None of these questions need to be answered immediately, but are being addressed and re-evaluated as they look over the information sent from Mary Bridge and listen to the series of events that lead us here. Chet and I have been very impressed with the staff, their attention to our perspective of Collin's story, and what the immediate concerns should be. It will take a couple days for us to learn the staff and routine, and the same goes for them of Collin. As they have been told, and can read in his chart, he is difficult to predict. We are all taking it one day at a time, and not trying to tackle too many problems at once.
The past couple days have been very difficult, but we have not given up hope or faith in God or in Collin. Although his body and brain are still doing unusual things, his bright eyes are still there waking up and looking around at us. This doesn't mean there won't be hard days to come. There definitely will be, but right now I think Chet and I both are a little more hopeful than we were on Thursday night. Yes, Collin is going to be different from here on out (which we have known). No, we don't know exactly what that future holds or how long it will be. Yes, we know that prayer works and miracles do happen. Collin has proven it to us before. Thanks for all the love, support, prayers and messages. We wouldn't be able to do this without all of you!
For those interested in a more detailed description of Collin's current medical condition, follow the link below:
(Warning: We've been keeping the updates as upbeat and "G-rated" as possible. This link will be blunt and technical in it's content.)
Medical Summary (This link will be under construction)
Saturday 2/26/2011 4:30 pm
Alright, here is a quick video update.
Friday 2/25/2011 2:00 pm (updated 2:35)
Okay. Quick update...
Que the Music...Picture Willie Nelson singing, "On the road again - Just can't wait to get on the road again. The life I love is making music with my friends..."
We are hitting the road and heading to Children's Hospital in Seattle. We will be moving tomorrow morning. Collin will get his 4th ambulance ride. We will let everyone know when we get settled into our new place. We will miss this area and will miss the "Tree House" where we have been staying for the past month. We will miss our giant room and the view of the Olympics.
We will keep you posted!
Thursday 2/24/2011 8:00 pm
Today is bad news. Collin had an MRI on his back and head. His head MRI shows what we've suspected, but have been hoping not to see. Collin's brain shows universal damage. The medical term is Ischemic Brain Injury. Collin's entire brain is affected. From a medical standpoint Collin's recovery does not look very good. His brain is shrinking from the dying brain cells and brain cells do not grow back. I know a lot of people have been following Collin's updates and I feel horrible that we have to break news like this in a very impersonal way (via the internet). Frankly, I don't know what Micah and I are going to do. We have a lot of tough decisions ahead of us. Obviously Collin's condition is not life threatening, but we do have to make difficult decisions about what to do from here. For starters, we will need to decide whether to stay here or move to Children's Hospital. Collin will likely need surgery to fix his tethered cord (which I'll give a short update at the end). Then we have to decide about whether to pursue the Baclofen pump or not. Then we need to decide which wall we want to go bang our head against. (Micah's friend Julie says this isn't a good idea.) Then once our head is clearer (or maybe not as clear), we will pray that God gives us some wisdom and more strength. Unless God provides Collin a miracle, which I have no doubt He can, the Collin of the future may not be too much different than the Collin we have right now. Of course there is one additional variable here (which the Neurologist pointed out), Collin has a very unique genetic makeup and he never has followed the "normal" rules. We can't really predict how he will recover from this extensive brain injury.
The second finding in the MRI today is that the doctors think Collin has a tethered spinal cord. This is very common in kids with Spina Bifida. It is difficult to diagnose, but will require surgery to repair. Basically, the spinal cord is designed to slide inside your spine. In kids with Spina Bifida, the scar tissue can create a restriction that does not allow the cord to slide and can "tether" as the child grows. If this is the case with Collin, then Collin will need surgery to remove some of the scar tissue. You are probably asking, "Could the tethered cord cause some of the problems Collin is currently experiencing?" The answer is probably no. The tethered cord certainly did not cause Collin's seizures and brain damage.
I know everyone will have a ton of questions. We will try to post more when we can wrap our heads around all of this. We have a lot of questions ourselves and hopefully some of these will be answered tomorrow when we talk with Neurosurgery.
We can't end this update on a sad note, so here is Collin when I got back from work today:
Wednesday 2/23/2011 9:15 pm
So it looks like the Baclofen is helping, but not working miracles to get him out of his arched and tense position. We increased the Baclofen dosage level this afternoon and also increased the frequency by a couple hours. Hopefully this will continue to help even more. Chet and I have been very frustrated with Collin and his arching, even though it isn't his fault, we feel like it is at times. We just want him to listen and follow our desire for him to relax and look more comfortable. We did not reduce or remove any of his other medications today. The doctor wants to get the arching under control first, and make sure the Baclofen is actually doing its job before we start messing with the other meds. We will get there eventually, hopefully, but we just have to continue to be patient (yet again). The next immediate plan is to see if the Baclofen would work better inserted directly into his spine, rather than taken orally. This is something that is actually pretty common for cases like this extreme tension. However, with Collin's Spina Bifida they aren't sure if the bone structure of his spine will allow for this procedure. Tomorrow we will have an MRI done of his head and spine to see if it can actually be done or not. If it is possible, we will most likely try it on Friday. So hopefully there won't be any major changes in the next couple days. Possibly more improvement, but it will be hard to say since tomorrow will be an odd day with the sedated MRI being done.
That is about it for Collin. We did get a smidgen of snow today! YEAH, we love the snow. There were times it looked like a blizzard, but was hardly sticking. It was one of those days you just want to curl up with a cup of hot cocoa and read a book. Hope you all are doing well and enjoying snow if you have it, or warm weather if you don't. I look forward to some more snow possibly tonight if it decides to grace us with it's presence.
Tuesday 2/22/2011 8:15 pm
Sorry for not updating on Monday. I think we were too frustrated to sit down and rehash the days events. Collin is doing great with his heart rate. He is looking around more and more. However, he continually arches his back and gets really stiff. This is really bad for his muscles and eventually will put too much strain on his kidneys. When his muscles are constantly contracted, the muscles start to break down and the kidneys have to filter out all the muscle breakdown. We are trying very hard to keep him hydrated so that the kidneys don't get clogged (literally). So for those keeping score, here is the plan:
Micah, Grandpa Fred, Grandma Linda, Grandma Sheryl and Chet took a very informative class on G-tubes today. Grandpa Fred almost passed out when talking about how to clean the G-tube site. Chet was very fidgety because he doesn’t like wounds and bodily fluids. However, we all made it through the 1-1/2 hour class. Now we all know what to do if Collin pulls out the G-tube…we hope that Micah is there to stick something in the gaping hole. Grandpa Fred will be passed out and Chet will be running around in circles.
Okay maybe it won’t be that bad. Grandpa Fred can handle wounds with no problems, he just can't talk about them. But Chet will be running in circles (sorry Micah). We are just still adjusting to this new thing on Collin’s body.
Here is a video of Collin and his physical therapist. The video isn't really too exciting, but we were all very excited to see Collin relaxed after many days of extreme back arching.
Sunday 2/19/2011 10:40 pm
Here is another high-quality video update. The producers at CNN would be proud.
Saturday 2/19/2011 10:40 pm
Today was a Mommy and Daddy day! Collin has been pretty calm since he went on his Beta-Blocker medication, so we decided to go to our real home and work on the bathroom remodel that we started just before Collin went into the hospital. This evening we went and played soccer again. It's been a whole month since we last played and we were definitely out of shape. Good news is that we had some subs and we ended the night victorious! We will be sore tomorrow.
So Collin started a Beta-Blocker yesterday called Propranolol. The Propranolol helps prevent the sympathetic nervous system from causing Collin's heart rate to skyrocket. Basically during Collin's fits, his heart rate would go into the 200's. Now during his fits he gets to 140 - 160. Overall his fits are much easier to control. I don't think that the Propranolol is a sedative, so he shouldn't be completely zonked from the drug. His G-tube seems to be doing well and he should start some liquid food tomorrow. Also tomorrow, we will stop his Clonazepam. Micah and I are curious how this will affect him, if any. Tomorrow I will do another video update. Should be fun!
Please keep praying for our little boy Collin. He is making progress! We can't say enough how much we appreciate all the prayers and support.
Friday 2/18/2011 8:30 pm
Today's entry is going to be short. We are really tired. Collin no longer has any tubes in his nose. Thank goodness. He is now drinking Pedialite through his stomach. It is kind of strange.
I think Collin is in more discomfort today. He seems pretty agitated, but not in his usual "fits". He's getting upset, but his heart rate is staying mostly below 150. Not sure what that means exactly, but he is definitely restless. I think maybe we are all just a bit grumpy today. It's a shame really because today is the Friday of a 3 day weekend and its payday. I think Collin is upset about not going to the Cabin this weekend to play in the snow and ride on the snowmobiles.
Well I'd better go. We have to introduce ourselves and Collin to a new set of nurses once again. Looks like I'll be sleeping here tonight.
Until tomorrow! - Chet -
Thursday 2/17/2011 7:00 pm
Collin's surgery went well this afternoon. He had it done between 1 and 2 this afternoon, and it went very well. One of Collin's doctors from the PICU was doing the anesthesia, which was nice to see a familiar face.
In other news, we found out the answer to a mystery that has puzzled us for many years. Shortly after Collin was born we received a package in the mail containing a beautiful, soft blue blanket specially ordered with Collin's name on it (you may have seen in his hospital pics). This blanket was delivered straight from the company without any indication of who ordered it. We asked numerous people if they had any knowledge of who ordered this blanket, but no one knew. I even went online to the company's website to try to figure it out. Over the years we have continued to wonder, because this blanket goes everywhere with us. It goes to Alaska, Hawaii, road trips, and was the first thing I grabbed before hopping in the ambulance with Collin over 3 weeks ago (along with Tigger & my purse). To my surprise my Mom informed me today that the mystery was solved! It was my Great Aunt Eleanor and she has been wondering for 4 years if we ever received the blanket. So, thank you for the wonderful blessing that we have always looked upon as a special mysterious gift. Collin has gotten numerous compliments on his favorite blanket the past few weeks in which they ask where we got it. We jokingly say it dropped from heaven.
Thursday 2/17/2011 9:00 am
I'm not sure how we didn't do an update last night, so I am doing one now. Hopefully some of you will check this morning and be praying throughout the day for Collin, Chet, and myself. Chet is at work and I seem to be a little more emotional today than usual. As we've talked about previously, Collin will be getting fed through some sort of tube. Well it has been decided by the doctors and ourselves which is best for him, a Gastrostomy Tube (G Tube) straight into his stomach. Today is the day that this will happen! I'm not sure what time, because it was supposed to be at 4pm this afternoon, but they have a cancelation this morning and may try to fit him in earlier. They perform the procedure over about an hour by Interventional Radiology. It is actually a pretty minor surgery compared to other options that had been considered. For many indivduals that have this procedure done, the hospitalization period is about 3 days. They come in have the procedure, wait 24 hours to start feeding through the tube, and allow a day or two for recovery and to make sure they can handle the feeds. That being said, that does not mean Collin is going home in 3 days. There are obviously many other factors with Collin currently that need to be managed first. I will go with him down to the surgery, but can't be in the room with him. He is still having his fits, but they have all been moderate, manageable, and shorter in duration yesterday and last night. That is about it for now. Hope you all have a good day!
Wednesday 2/16/2011 3:30 pm
Today I am going to show a Video update. We have also added some more pictures to his Hospital page.
Wednesday 2/16/2011 8:30 am
We are awake and at the hospital, which is not what we wanted. We did make it out for dinner last night to El Matador, which was absolutely delicious. I also stayed at the Tree House to get some good rest, because Collin was doing so well. We knew we were just a phone call away if any "fits" came on. Collin had been good all afternoon and night untill we got a phone call from the night Dr. at 4:30am. He had been in one of his "fits" for about a 30 minutes and the morphine had calmed him, but not brought him completely out of it yet. She (the doctor) was going to give him the Ativan if it was okay with us. I said yes, because my first reaction was that the Morphine wasn't working. So Chet and I got up and headed to the hospital while they gave him the Ativan. Once we got there it still took a little while for Dad to get him calmed down (even with his magic touch, because he is better than Mom for some reason). Then at 6 am Chet decided (not without debate) he would say by to Collin and go to work. Collin started to go into another of his "moderate fits", gave him morphine and he immediately calmed down. Chet decided to stay at least for the morning, and reassess everything once the day Dr. gets here. We just want to scream because we thought we had found a solution with the Morphine, but then it didn't work at 4am. I would like answers as to what is causing it, but what I (and the doctors and nurses) want at this point is just a solution that works.
Tuesday 2/15/2011 6:30 pm
We have now surpassed the 3 week mark! Collin has definitely set a new record for his length in hospital stays, in addition to how many stuffed animals he can collect in that same period of time. We love each and every one that we've received. The most recent came on Valentine's Day from a dear friend named Collin in Missouri! We say thank you, especially since Chet is a Charlie Brown/ Snoopy fan. That being said, Chet explained yesterday that Sunday night was a rough night for all three of us. Last night was better in that Collin's fits came at regular intervals similar to Sunday afternoon and night, but we managed them better, being that we were a little more prepared and had more tools in how to handle them (drugs and a variety of comforting methods). I spent the night with Collin so Chet could sleep at the Tree House and go into work today, since he can't just stay at the hospital forever every time Collin decides to have a "fit."
So here is a long description of what happened over the past couple days, and how it has progressed into the current situation. He received his last (very small doses of Ativan and Methodone Sunday and Monday). These fits do not appear to be withdrawal related, because Collin doesn't have any of the typical symptoms of withdrawal (these "fits" or "storms" as we have called them before aren't the same as withdrawals). They also are not the same as seizures, although can appear similar, because Collin didn't show seizure signs on his previous EEGs while having a "mild fit," as I will call it. Collin has different levels of these agitated "fits" or "storms."
There are "mild fits" where he gets irritated and his heart rate fluctuates between 130-160 and his muscles tense up, arms curling in, but he can get himself back down and out of them fairly easily.
His "mediocre fits" the heart rate fluctuates between 145-195, with him arching his back and tensing his arms and legs in the straight position (these are harder to get out of, but can be done on his own or with careful comforting).
His "bad fits" the heart rate gets anywhere above 200 and stays there the majority of the time, with a few calming spells before it goes straight back up, and it is basically impossible to do anything to get him out of it without drugs. With all of these fits he can be easily stimulated by noise or touch if we aren't careful. That doesn't mean we don't talk to him or touch him during or after, but that there is a balance of slowly and calmly bringing in noise or touch. Just so you know his resting heart rate ranges between 60-125, depending on if he is completely exhausted and sleeping, to being slightly awake.
Over the past couple days, he had mostly "moderate fits" to "bad fits." We had used a combination of drugs to combat these fits, but he was still usually left in an easily agitated state. The first drug, Ativan, didn't seem to do anything, even if given a second dose, so we gave him Morphine on top of the Ativan. One doctor also prescribed Clonazepam to start him on regularly, a drug in the same family as Ativan but longer lasting. The doctor we have been working with the past couple days really wants to determine which drug is helping these fits, because there appears to be a hint that it is the Morphine that helped the most.
Overnight: I slept here with Collin, and he went into a few fits throughout the night (I'll approximate 10pm, 4am, 6am, 8am). Basically the nurse and I tried to manage and assess the severity of the fit and when to give a drug, how long to wait for it to take effect before we did anything else. We were given some leeway without having to consult the doctor every time he had a fit since some of the drugs were given at their scheduled time, and the Morphine was prescribed for use as needed (without multiple doses at once). The nurse and I both agreed that this allowed a process to take place that would give the doctors a picture to look at to see what helped and what didn't help (we were not being doctors ourselves). The Morphine seemed to help, but not quite as much as we would hope. So the doctor after reviewing what happened with me and the nurses notes, thinks the small dose of Morphine they started him at is not enough, and that he could actually get a larger dose. This is what we did at 12pm today, and what do you know, he has slept all afternoon comfortably without any fits. Yes, he is on Morphine, which we gave him again at 4pm so we could keep ahead of the curve and let his little body (and ours as parents) recover from the past couple stressful days. I don't know what this means for future management, or if it is truly pain. That will be a discussion for the doctor sometime when we see her next. I saw her a couple times today, but not since we did the higher dose at noon. Hopefully we will see her before she leaves tonight because there are a couple other things to discuss.
Other News: Collin had a couple tests done to help us and the GI doctor determine what kind of feeding tube would be best for Collin. Both tests came back with good results. One showed that his stomach empties itself at a very quick rate (almost too quickly), which means he can tolerate "bolus feeds" (food more as a meal like you or I). The other showed that he doesn't have very much reflux, if any. The small amounts of reflux are most likely more a result of the feeding tube going into his stomach that is constantly keeping the valve open for reflux.
We will continue all the updates. I had started this update at 9am and haven't finished until now. Hopefully Chet and I will feel comfortable leaving Collin for a couple hours to go have a belated Valentine's Day dinner somewhere. I may be too tired to stay awake, especially if we decide I need to sleep in Collin's room again tonight, and not the Tree House next door. We will see and take life as the adventure that it is. Thanks for all the prayers, they are truly getting us through. Last night was rough, but I had an amazing nurse that worked through it with me and agreed that we were doing the right thing each step of the way. It may sound like I didn't get much sleep, but in actuality I think I slept a good 4 hours plus the naps before or in between (I didn't seem tired until this afternoon when my brain turned to mush and forgot all the timing of the drugs and fits). So thank you God for computers that keep track of everything, good nurses that understand, and sleep when we can get it!
Monday 2/14/2011 7:00 pm
Collin's fits were very difficult last night. Micah was going to stay the night with Collin and I was going to stay the night at the TreeHouse. Micah called me at about 11:30 saying Collin is having a very bad fit. We figured he would eventually calm down and I decided to go back to sleep. Micah called me sometime after midnight saying that Collin was still having the fit and that the emergency dose of Ativan did not help and they were ordering Morphine. Collin's fits are very difficult to witness, especially as parents whose job it is to comfort your child. With some of Collin's fits there is nothing we can do except keep his bite block in place and try to soothe him as much as possible (we've tried not soothing him and that doesn't work either). For longer fits like this we have to keep cold rags on his arms, legs and head. After Collin received his morphine he did calm down and his heart rate and tensing eased. I think the fit lasted almost 2 hours. I can't imagine how much energy he burned, but his arms and legs were roasting even using the cold rags. Micah and I had a long night sleeping (or not sleeping) here in Collin's room.
But enough with all the gory details. Some good news is that Collin seemed to have a better day today. Not much better, but some improvement. The night is still young, but Collin has had less fits today and the fits have not lasted as long when compared to yesterday. We did have to give him some morphine at about 4:30 this afternoon. He is currently sound asleep with his COLLIN blanket draped over his eyes.
An interesting note, and the doctors are not sure exactly what this means, is that Collin did not react to his emergency dose of Ativan during his fit last night. Ativan should have eased the "storming", but it did not. The morphine is for pain control. I guess there is still some question as to if Collin's fits are really storming or if it is his reaction to being in pain. We may never know, but we are trying to figure it out.
That's about all from me. Micah is staying the night with Collin so she might do an update later.
Please keep praying for Collin. Micah and I could use some of that prayer too. We are tough, but are tired. Thanks for all the support!
Sunday 2/13/2011 9:45 pm
Well, the day started out really good. Chet had gotten more sleep than he expected, and Collin spent most of the day not getting as aggitated as yesterday. We had a very nice visit with my Aunt Jenny and Uncle Ron, who stopped by on their way home. Thank you for all the fruits and snacks! Collin got a bath that he mostly enjoyed and then spent some time on our couch hugging Mom and Dad. He seemed really calm and enjoyed it while the nurses changed his bed. When it was finally time to put him back in his bed he got very overwhelmed and worked himself into one of his pretty bad fits. After about an hour, we finally got him calmed down and back to sleep. We decided it was safe to meet some friends for dinner back at our temporary apartment a few minutes away. Everything was fine while we were gone. We got back and it was about time to turn him and do a couple other things, which resulted in another fit that lasted about 30 minutes.
As Chet said a little bit ago, "I suppose it is just a reminder of the long road we might have ahead." It is very difficult to tell what really triggers these fits, besides moving, touching, or disturbing him in any way. Nobody really knows, besides God, what is causing these fits. As we have said before, it is most likely one or a combination of the following: pain, brain dysfunction, withdrawals, or confusion from waking up. We will never really know I suppose. Hopefully Collin is exhausted enough that he won't have anymore fits through the night (I'm not sure if that is for my sake or his sake, I would rather not get up in the middle of the night while I take my turn of sleeping in the room with him.)
Sunday 2/13/2011 9:45 am
I had a pretty good night with Collin. He was pretty calm through the night. I don't know how patients get any sleep in a hospital. Every 2 hours they have to do something. I'd be really mad if someone woke me up every 2 hours.
It appears that Collin's fits are getting a lot better. Yesterday his heart rate would get in the 190 to 205 range and he would violently grind his teeth. Last night and today his heart rate barely gets to 165 and he hardly grinds his teeth. He is also alot easier to calm down. So we are much happier. He had is last dose of Ativan last night and only has one more dose of Methodone. I am more convinced that his fits were more withdrawl related. We will still have to see how his brain recovers.
That's all for now. Have a nice Sunday morning.
Saturday 2/12/2011 8:30 pm
The day turned out to be a lot more difficult than we had hoped. Collin has gone through several fits today. These fits are similar to the fits he had in the PICU, but less intense. He is contracting his arms differently, which might be a good sign (it's really too hard to explain). We are hoping that these are caused mostly by the Ativan withdrawls. This morning he got better almost immediately after getting his Ativan dose, and he is at his worse just before the Ativan dose. Chet will stay the night here in Collin's room to help calm Collin during his fits. We finally were able to get a bite-block (wedge) which has helped keep Collin from grinding his teeth (which is really disturbing for everyone in the room).
We would like to share that Collin's neighbor in the PICU passed away yesterday afternoon. We had spoken with the mom a few times and shared stories, placing them in our hearts and prayers constantly in addition to Collin. Their son had also been born with a congenital disorder that made life a challenge at times, but had been a joy just as Collin is for us. My heart is breaking for them, because the road they followed was not an easy one, and will not be for a little while to come. I know they are very overwhelmed and grieving right now, but are still praying for Collin. We just ask those who have been praying for Collin also pray for this dear family who lost their son yesterday.
Saturday 2/12/2011 9:00 am
There is a lot more activity in the Collin camp today. I am quite sure he is very close to overcoming the sedation medication. I don't want to jump the gun, but this morning he was very close to waking. He actually started crying. Apparently last night he started crying a little bit. The nurses discovered that his bladder catheter was pinched and his bladder was full (and probably uncomfortable). This morning when we came in he had a lot of eye movement and when I tried putting on some lip medication he actually started crying. It was a really sad, disoriented cry, but he was definitely reacting. I really hope this is good news.
We still don't know how much brain damage there is, but I am really hoping it is very minimal or none at all. Keep up the prayers for Collin. I really think he is going to win this battle.
Friday 2/11/2011 9:15 pm
Overall it was a good day today. A lot has happened. First of all Collin seems a lot more active. There are times where we expect him to just turn his head, look at us, stretch his arms up and say, "That was a good nap." He definitely has a lot more eye lid and eye movement. At times it really seems he is looking at something. He is responding a lot more to touch and noises. I think a lot of this has to do with him getting closer to being off sedation (which I'll talk about in more detail later in this update).
I stayed home from work today (sorry everyone at work!). However, it was very beneficial. Ever since we were released from the PICU on Monday it seems like there has been very poor communication with the doctors in charge of Collin. Micah and I were never really sure who was in charge of making decisions and what the "plan" was. Micah and I have always been very involved with all of the decisions made for Collin's care, so it was very disconcerting for us not to know exactly what was happening. So we had discussions with the medical team and others players involved and I think we have resolved our communication problems. In fact, one phone call resulted in a nice stream of people coming into Collin's room and we feel much better about knowing the "plan". (Micah insists that I call it a “tentative plan”, but I like to refer to it as the “plan”. (and it’s my turn to do the update))
So here is what we know of the "plan". The goal is to get Collin home by the end of next week. A lot has to happen before then, but we've had nice discussions today about getting the supplies we need at home. Things most people don't need like a hospital bed, special wheelchair(s), bathing chair, feeding equipment, and the list goes on.
(Live Update: Collin is making some very nice moaning noises. Sounds a lot like the Collin we know!)
One disturbing thing we have to consider is how to feed Collin. Eating through his noise is only temporary. Long term solutions will require surgery. We don't have to decide before we leave, but we do have to decide soon. We are just hoping he wakes up before we really have to decide!
So here is the sedation plan. My co-workers might be interested in this because we get to talk about half-life (no not the video game).
Collin is on Ativan which is a sedation medication. The pharmacist’s plan is to have him completely off Ativan by end of Sunday.
Collin is on Methodone which is a narcotic. The pharmacist’s plan is to have him completely off Methodone by Monday morning.
But here is the catch. Ativan has a half-life of 6-17 hours. Methodone has a half-life of 5-33 hours (in some cases up to 62 hours). It takes about 5-6 half lives for the medication to be considered "out of the system". This means that Collin could take up to 4 days to get the Ativan out of his system and up to 8 days to get the Methodone out of his system. With our experience of Collin and his Tetrasomy we are pretty sure he is more sensitive to medications and we are not sure what quantity of this medication causes him to act sedated. This means that we think Collin would be on the longer end of these half lives.
That's about all for today.
As a side note (for all you engineers and other science geeks), girls really aren't that impressed if you tell them you know the half-life equation.
Thursday 2/10/2011 7:15 pm
Not much to talk about today. He got some hand splints made to help with the clenching of his hands, which was kind of interesting. Too bad Chet missed out, I know he would have been analyzing the material and how it worked. Probably would have given some scientific explanation that would have just made me make fun of him. In regards to medications the Keppra was stopped, and the Ativan and Methodone dosages were both decreased starting tonight and tomorrow morning. This is a good thing according to us as parents, because it means less drugs in his body. Drugs are helpful in some instances, but overall I like to avoid them if possible. Besides continuing to decrease the medications every couple days, the next transition will be deciding how Collin will be fed when he goes home. It is not expected for him to wake up before he leaves, so he will no longer eat the tasty mac 'n cheese or chicken nuggets he loved so much (at least not right now). We have a couple different options of food/ formula and method of eating. Deciding what is best for him and us, and then possibly doing a minor procedure early next week is the tentative plan right now. According to the doctor this afternoon, the "best case scenario" is that Collin would be heading home the end of next week. This is not necessarily our "best case scenario," but is part of our new plan for Collin right now. We still pray all the time for him, and I saw his pupils move around a little bit this afternoon (not just blink or stare off into space). The Lord has His plan, although it may not be clear to us right now. We will continue to wait and do the best we can do with the doctors and nurses to take care of his body in the mean time. It is a challenging time for the entire family and community of people that have gotten to know Collin, but we still love him with all our hearts. I often think Collin is having wonderful dreams of being at the beach in Hawaii or Alaska (apparently Cousin Sarah says it is in our backyard). If I were him, of course I wouldn't want to wake up to be in the hospital, but would rather be playing wherever he may be and with whomever he chooses.
Wednesday 2/9/2011 9:45 pm
No real apparent progress in Collin waking up. He seems to be more relaxed each day, meaning he shows very little signs of "posturing" (his fits). He's not tensing up as frequently during diaper changes and repositioning. He is still being weaned from sedations, which will take a little while depending on how Collin's body reacts and what the doctors and pharmacists want to do each day as we progress. The good news today is that he will no longer be on the Keppra (anti-seizure medication) he has been on since the first Tuesday he was here.
We were given some interesting information this evening from the neurologist. At this time I cannot discuss all of the information, but I can tell you Collin's case is still quite a mystery to the staff, after all their research and discussions with specialists and possible explanations. Collin had another EEG today. Results were mixed, but overall there seems to be some slight improvement, but not as much as she would expect or hope for. Good news is that there are no signs of seizure and no evidence that he is susceptible to more seizures. Therefore we are stopping his Keppra medication. The neurologist isn't really sure why Collin isn't awake. For now we are telling ourselves that Collin is very sensitive to the remaining sedation medication he is receiving (although they are at very low doses), and his brain is still recovering from being sick. We won't know for sure until he is completely off sedation.
The neurologist also talked to us about Collin's 2 MRI's. Collin's MRIs were abnormal (as expected with his genetic Tetrasomy 18P). However there were some abnormalities that showed up on one MRI that did not show up on the other MRI (and vice-versa). This may be a case of something temporarily "damaging" Collin's brain, but then re-healing?? It was not like a stroke, where the "damaged" part of the brain remains damaged. Her description was more as if damage appeared in one area, healed itself there, and then damage showed up in another area where it hadn't been previously. They, and we, are not really sure what caused this, or how to explain it. A third MRI done in the future when Collin is healthy will hopefully reveal more. So what we take from all this is that God is working in Collin's body and brain. Basically we need to continue on our path of weaning Collin from his drugs, and wait on God to work His miracle in this little body He gave us to take care of and watch over. Although the neurologist's description didn't give us answers as to what, why or when, it did give us hope that Collin's sickness and brain are not completely understood right now, and that basically anything could happen in the future. That's about the only way we can comprehend it all. Thanks again for all the prayers and support.
Tuesday 2/8/2011 8:45 pm
There really isn't anything new to report today. Slowly working our way off the sedation. His face is looking a lot better. His lips are healing well and the sores around his mouth (from all the tape) are nearly gone. He seems quite relaxed and peaceful.
Collin just reminded me that he's developing a cough reflex. This is a good thing. He needs to be able to clear his lungs.
We'll continue to make daily updates (even if there isn't anything really to report). Most updates will probably occur between 8:30 and 9:30 pm. If more exciting things happen during the day, we'll post more frequently.
Monday 2/7/2011 3:30 pm Updated 6:00 pm
Some good news. Collin has been moved out of the PICU and is now on the general
floor. We have a huge room with a possible view of the Olympics (it's cloudy
so we can't tell for sure). Our new giant room number is 569.
So being moved from the PICU means that Collin is stable, he is not on a ventilator, he is not on IV drips (for sedation) and probably more. That being said he is still sedated via syringe. He is currently on Ativan and Methodone, and has a Clonidine patch (for the brain "storming"). Collin's brain still has some significant injury. We really don't know how much, but he has a long road to recovery. Kid's brains are very resilient and we know Collin is a fighter. It is just going to take time.
The short term goal is to get Collin off of the Ativan and Methodone. Nurses will start to slowly reduce his sedation over the next 24 to 48 hours.
Micah and I are in much better spirits today. Our new room on the general floor is a big improvement from the room in the PICU. We basically have a corner room that was designed as a double room, but is setup as a single room. We have our own bathroom and shower. We certainly cannot complain about the accommodations.
Best news of the day is that Micah got to hold Collin. She held him for about an hour. He's pretty peaceful right now, but I plan on holding him sometime tonight. It should be very comforting.
All of Collin's other functions seem to be working as close to normal as we can ask. Our prayer right now is that Collin's brain continues to heal. We would like very much for him to have some response to our presence. We know that God listens to our prayers and we continue to thank everybody for their support and encouraging messages.
Sunday 2/6/2011 7:15 pm
He is off the ventilator! That being said, it wasn't necessarily easy getting there. He wasn't happy about it being in this morning, but he wasn't necessarily happy about it being out once it was all said and done. He had been off of his sedation medications for 36 hours and doing fine for the most part. However, after all the fuss of taking him off the ventilator there were some signs that he was going through withdrawals and he returned to his previous fits. Right now it is difficult to determine the difference between his brain not functioning properly and the withdrawal symptoms. This morning was spent trying to find a way to keep or get him calm. We eventually found a way in a combination of different sedation drugs (Ativan, Methodone, and Precedex) that will help wean him from his withdrawals and give his brain a bit more time to relax. It sounds awful putting him on new different drugs, but it was necessary, and it is fairly common to use these to wean indiviuals who have been sedated for a week or more. In other words it was a very difficult day for us, but he is stable and calm now. He has been breathing fantastically on his own, not even needing any oxygen. So in other words, good news, but it is getting very difficult to have patience for his brain to recover. We still appreciate all the prayers, and hope for the best.
There was a couple things that we have forgotten to mention in the past couple days. One, he did not have the mycoplasma that we had talked about as a possibility. Two, that the Para Flu-3 virus he had, or has, can actually cause some of these symptoms. Usually not to this extreme, but most likely Collin had an atypical form of HLH that was triggered by the seizure or virus and contributed to all this. Not that any of that matters at this point, because his kidneys and liver are practically back to normal.
On a happier note, the PACKERS BEAT THE STEELERS!!!! HOORAY! Thank goodness, because the doctor on day shift this week is a serious Greenbay fan. It may have been a miserable week to work with him if they had lost (so we've heard). Yes, we did manage to watch the game and ads while in the hospital. Hope you all had a great superbowl sunday!
Saturday 2/5/2011 7:30 pm
Collin is off sedation medication. He just has a patch with Clonidine. Good
news is that he only has a few fits, mostly during diaper changes and re-positioning.
He seems much more alert. His eyes have some movement and he is sensitive to
physical interaction. The goal is to have him off of the ventilator tomorrow
morning. Right now he appears to be triggering all the breaths on the ventilator.
The concern is that once the tube is removed from his lungs he may block his
airway when he goes into his fits. We are a little nervous. We are making progress...slowly...
Looks like we will be hanging out with Collin during the superbowl. We've been reading Collin his messages that everyone has posted on his guestbook. We enjoy reading them and it keeps our spirits up. Don't be afraid to post more than one message!
Friday 2/4/2011, 9:00 pm
Collin is now completely off the sedation medicine. He is still on a low dose of Fentanyl (0.05 mcg/hr) which is used for pain. The Fentanyl may act as a slight sedative. Collin also has a patch (clonidine) on his stomach that is keeping his brain activity from "storming". Collin is still not responsive, but it's only been an hour and the patch will keep him fairly sedated. The good news is that he is not going into his fits. We are anxious to see how he is reacting tomorrow. We are keeping faith.
Friday 2/4/2011, 9:30 am Modified 11:00 am
It's Friday. Been a long week. Collin is sedated, but
we will be reducing his sedative over the next 24 hours. Hopefully by 11:00
tomorrow, he'll be off of the sedative completly. MRI results from Thursday
look better than the results from Sunday. That said, Collin is exhibiting some
damage to the brain. Doctors are using the term diffuse ischemia. Collin may
have suffered a loss of oxygen and/or blood flow to the brain. It is not possible
to say the extent of the damage, but it appears there is some damage. I guess
it's not possible to know if Collin's brain has always been like this since
we've never had an MRI before. All we can do now is pray and wait.
On a more positive note, Collin's liver and kidneys aren't really a problem anymore. We will likely stop providing liver and kidney updates.
Please do expect more Collin updates over the
weekend. We may also add more pictures to his picture pages.
Have a great weekend and go Packers! (We aren't necessarily Packer fans, but we definitely are not Steeler fans (sorry big brother Tony)).
Thursday 2/3/2011, 9:15 am
Collin's friends from his school Madrona Heights
Good morning! It is a new day and my brain has now had time to digest what happened yesterday, emotionally and mentally. So here goes my explanation of events yesterday (it is lengthy). In the morning things were looking better. The liver and kidney values continued to improve (even better today 2/3), so we felt hopeful and felt like we were moving forward, closer to recovery (not out of the woods yet by any means).
Late Morning (2/2): The neurologist came in and wanted to do another EEG to see how his brain activity levels were, and if they had changed. The doctors decided to take him off of sedation (current drug levels are very low 1.0 mcg Fentanyl & 0.1 mc Versed) for you medical people) for two reasons: 1) to have his brain more awake & brain levels less effected by drugs for the EEG, and 2) to see how he would do off sedation to eventually take him off the ventilator since he seemed to be breathing on his own more. Previously Collin had taken a couple hours to react to being off sedation, and he would react with increased heart rate, breathing rate, bringing his chin to his chest (blocking his airway), and tensing his body and muscles up by locking his arms and legs. We thought we had some time before this started so we went to grab lunch and start some laundry, and be back soon.
After Lunch (2/2): We returned to his room to find a handful of people, including the doctor. He had had one of his fits while we were gone, and the nurse basically described it as if he were hyperventilating. His heart rate spiked around 200, blood pressure went up, breathing rate was through the roof, and his muscle tensing contributed to a spiked fever of about 104. They are calling this reaction Thalamic Storming or Sympathetic Storms. We have been told that Thalamic Storms are only seen in individuals that have been sick for sometime or result from some previous underlying condition. They also found some fluid/ blood in his lungs from a pulmonary hemorrhage, most likely a result of a form of yeast or thrush called Candida or the tensing of his body. The swab of his mouth had just come back positive for the Candida test, which can often result from being on antibiotics for a period of time (which he has been since last Tuesday). Both the pulmonary hemorrhage and Candida are treatable and not that big of a deal, but at the time felt like just another thing going wrong and that we were walking backwards not forwards. They put him back on sedation.
They still don't know what caused all this, but there are a couple more ideas floating around that are pending test results. One includes the bacteria Mycoplasma, which can be the cause of walking pneumonia. I still don't completely understand how the Mycoplasma would cause kidney, liver, and brain dysfunction, but it is a possible cause. After all this excitement the EEG was done, which showed the brain activity was slightly better than 2 days ago, but not by much. Basically we still don’t know what is causing this brain dysfunction. It could be the initial unknown infection, the prolonged initial seizure, the sedation and anti-seizure drugs (Kepra), the high levels of kidney toxins in the blood (BUN & Creatinine which are improving and shouldn’t be much of a factor), or a combination of all of the above. He has also been started on a sedating patch medicine called Colnidine, which will hopefully, gradually take the place of his other sedation drugs so he can be more awake, but not perform the Thalamic Storms that cause all kinds of problems.
So we are basically back to a waiting game on pending test results to find
out the cause, and for his kidneys to return to more normal levels. Then hopefully
his brain will start to recover. The brain is so complex that I’m not
even going to try to understand, but just wait and trust in God and all the
prayers out there. Again, thank you so much for all the support and messages.
It is truly amazing how far our circle of friends and family can reach. Our
focus is here right now, but our thoughts and prayers are with many of you as
you have your struggles as well. Thanks - Micah
Wednesday 2/2/2011, 3:45 pm
We tried to take Collin off of his sedation and it did not go well. His kidneys and liver are seeming to improve, but his brain is not. A lot is happening and we just have to wait for more test results. Please pray that Collin's brain was not injured during his initial seizure. We'll post more as we learn more.
Wednesday 2/2/2011, 10:00 am
Happy Groundhogs day! No dialysis today. Hopefully no dialysis EVER! Kidneys
are continuing to improve. Waiting for the doctors to decide if we can start
waking him up. I'm guessing it won't be today, but they haven't let us know
yet. Looks like we will be doing another EEG today. This will show the amount
of activity in his brain.
Chet and Micah are still doing well. It has been very encouraging to see all the messages to Collin. They are literally pouring in from all over the world. Collin has had messages from Australia, London, Finland, Japan, and from all over the United States. I am anxious to get them printed out so we can tape them to his wall.
Here is a picture of Collin and all his animal friends. It is intended in good humor.
Tuesday 2/1/2011, 5:15 pm
GOOD NEWS! No dialysis today! The kidney toxins (creatinine and BUN) have dropped a little, so hopefully they have turned a corner and will continue on this path of improvement so we can avoid dialysis. As long as this continues hopefully his brain activity will follow suit and improve as well. We will take the good news of kidney improvement for now, and wait on the latter. I firmly believe that the power of prayer is working miracles, as is all the hard work that the doctors and nurses determined to figure out how to best help him pull through this. We still may not know what caused all this, and we may never find out. Part of me doesn't care, as long as Collin proves that he is the strong little boy we know him to be.
Tuesday 2/1/2011, 11:50 am
It's February! To do dialysis or not to do dialysis. That is the question.
We are waiting for one more blood test. There are signs that the kidneys are doing their job. The "toxin" (creatinine and BUN) levels appear to be getting lower. See http://en.wikipedia.org/wiki/Creatinine for more info. This is really good. Collin is still sedated, but at much lower levels. He has some response to touch. The hope is that once the creatinine levels are down, his brain function may improve. Go Collin!!
Monday 1/31/2011, 5:45 pm
Things are emotionally rough right now. Collin should be waking up more than
he is, but he's not. Brain activity is very low. Doctors used the term "Comatose"
for the first time. We are hoping that it is just his body slowly getting rid
of all the sedation drugs. His kidneys still aren't working fully so the high
"toxins" in his blood may be contributing to his Comatose state. We
had to put him back on the sedation medication because he was becoming agitated
and his heart rate and breathing rate were increasing too much. Collin has just
been approved for Tylenol so hopefully once he starts receiving Tylenol we can
reduce or elimate the sedation medication.
We just want the little guy to wake up. We miss his laugh and his contagious personality. Please continue praying for Collin. God has a plan and we are doing our best to be courageous. Thanks for all the support.
Monday 1/31/2011, 10:50 am
Today Chet went back to work for a day for the first time in a week. He wants to make sure he is around when Collin decides to wake up, so better to work now than later. We are enjoying all the messages on the guestbook, and have been sharing them with Collin. As for news, we are still waiting on doing the kidney dialysis. It is still a possibility, but for now we are still wanting his kidneys to start working on their own, just watching them very carefully. Although his peeing has improved, his kidneys still haven't shown us signs that they have started to filter the chemicals out of his body like they should. The liver continues to improve, which is good. They had lowered his sedation medication yesterday afternoon a bit, and then this morning we decided to stop it completely and see how his body reacts. The sedation will stay in his body for quite awhile, so it isn't like he will automatically wake up, but he may get a little more responsive. They can restart the sedation at anytime if they need to for any reason, we will see what happens. He has been blinking his eyes more and moving his legs around a bit as well since they first lowered the sedation medications, which is good. Right now it is basically just a waiting game on the kidneys. We are seeing improvement with the rest of the body, we just really want to see the kidneys follow suit sooner than they are. Collin has always required us to have more patience than usual no matter what the situation. As the nurse and I were giving him a bath and washing his hair this morning, we were saying that most of us would pay good money for this kind of treatment. They use a special shower cap that gets warm and soapy while you massage his head. Now who doesn't want a nice relaxing head massage & a sponge bath!? We miss all of you and look forward to when he can show you what an amazing little boy he is.
We have been sharing some of the pictures and videos from the website with the staff here and they love it. They can't help but laugh with him in the snow. The staff are wonderful here and are taking such good care of him, that we don't worry at night, so we can get some good sleep. We have managed to go out for dinner with friends or family a couple times, which is nice, even if I'm so tired I just want to lay my head down and sleep. Collin is utilizing all his new stuffed animal friends to keep him cozy and propped up in bed. They are doing a good job of watching over him. Thanks for the flowers, we will be sure to enjoy them back at our temporary apartment, because we can't have live flowers in the PICU. They are beautiful and will brighten up our room away from Collin. Thanks for all the thoughts, prayers, messages, and gifts! We are enjoying them all and help us get through the day. - Micah & Collin
Sunday 1/30/2011, 3:30 pm
Nothing too exciting. Kidneys seem to be improving. Liver seems okay for now.
Collin had his first MRI today. That was quite the adventure. Getting him from
PICU to the MRI room took a lot of work. There are a lot of hoses and wires
to deal with. Collin's life was literally in someone elses hand for more than
an hour (Nurse hand pumped air into his lungs while he was off the breathing
machine). It took 3 nurses and 2 parents to maneuver the hallways in a wobbly
Nothing more to add for now.
Saturday 1/29/2011, 8:30 pm
Micah and Chet had a nice spaghetti dinner (thanks to the Kimbrell's) at the
"Tree House" (the place we are staying on campus). But enough about
Collin is producing more pee! Maybe not enough to overcome all his water retention, but its good news. Hopefully this means his kidneys are getting better. From what I understand the doctors will continue to monitor his liver. They want to make sure it was just the Para Flu that caused his illness and not HLH. HLH is some very bad medical thing that is better explained by: HLH link
Tentative plan as of now:
Roughly 48 hours more monitoring while sedated and on breathing machine.
Monitor his kidneys. Perform dialysis if needed (may not be needed)
If all is well, they start letting him wakeup and start breathing on his own.
Pray really hard that he will wake up and be his normal self.
Saturday 1/29/2011, 12:00 pm
I forgot to mention a couple other details. He was actually started on a feeding tube yesterday for the first time, and they have gradually brought the levels up to what he should be eating. His system is tolerating this very well so far. He is less puffy, which means he still has a lot of fluid in his system, however, he is continuing to pee and starting to poop. These are both positive things, even if his kidneys are not filtering products like they should yet.
Collin update Saturday 1/29/2011, 9:00 am
Yesterday was a nice calm day that showed liver improvements, and slighty worse levels for the kidneys. Overnight shows the same trend, slightly worse levels for the kidneys, but his liver continues to get better. We aren't doing dialysis yet, but would not be surprised to be doing it by the end of the day sometime. This is not preferable, but not a huge deal since we have been expecting it and watching it very closely. Wish we could say thanks and show how much we appreciate all the thoughts, but we truely can't. Collin will eventuallly when he pulls through.
Okay, so we have a calm day and have time for a much better explanation of this weeks events. We still don't have an answer to what triggered the fever or seizure, but we do have some improvement in bodily function (explained below). In my mind this means that Collin is a fighter and all the prayers and thoughts are working. For those of you that want to ask and share others to pray that is fine. Share as much as you like. The more the merrier is my opinion.
Monday: Collin had a slight fever Monday morn, gave him tylenol and was fine but slightly grumpy during the day, with no more fever until chet put him to bed. He was slightly warm at bedtime and we were going to give him a suppository Tylenol a little later before we went to bed. A little after 10 pm he woke up and made some noise like he would fall back asleep, and chet went in to check on him at 10:30. He was roasting and having a seizure. He has never had one before, and we've never been concerned about them, so this was brand new to us. I called 911 and we rushed to Mary bridge ER in the medic with a fever of 106.
He seized for approximately an hour before all the anti seizure drugs kicked in. The fever was coming down slowly during this time as well. We were in the er until about 3:30 am when we were transferred to a regular admission floor. Over night and throughout the morning we were unsure if he was having something called subclinical seizures (seizures not physically visible). Around 11 am Tuesday it became apparent that his body wasn't working quite as well as it should be at this point and his breathing went a little haywire, so we were transferred to the Pediatric ICU.
Tuesday: in the PICU we started watching his neurological function with an EEG to see if he was still having seizures. His blood pressure and calcium levels were low, and was still on an oxygen mask. They had started lots of tests to determine the cause. Throughout the day we waited for him to wake up after all the drugs, and started other drugs to get his blood pressure under control. An anti seizure medicine was also started because it appeared he was still having some unusual brain activity, possibly the subclinical seizures. Not that Collin has ever been normal, and the difficulty is that we didn't have a previous EEG to compare it to. Eventually Collin went off his oxygen mask, blood pressure returned to satisfactory levels, and in outward appearance things looked good. However, Collin's liver and kidney functions were deteriorating.
Wednesday: We sat around waiting for Collin to wake up. He didn't. Meanwhile, his kidney and liver functions continued to not improve. Doctors were contemplating sending him to Children's hospital for specialized liver treatment. They watched him close all day with great concern. Livers can completely fail very quickly. We were being patient because we know Collin is always a little slow to react and recover, but that he has always pulled through with flying colors before.
Thursday: Wednesday night and Thursday morning were rough. Collin was having these fits where he would go very rigid and have trouble breathing. In the morning they decided to put him on the ventilator and under sedation. This would help his stress levels and allow us to concentrate on his liver and kidneys. Needless to say collin was baffling the doctors. His genetic disorder always makes things complicated. They were pumping a lot of different fluids into Collin to battle all the little things that were out of normal. They were also performing even more tests and rechecking previous ones as all the tests weren't showing a definitive source of the problem. Unfortunately, because his kidneys aren't working fully, Collin is looking very swollen. He can't get rid of the fluids fast enough. The good news from Thursday is that his liver function seems to be improving, and the kidney function isn't deteriorating as quickly as before.
Friday: Collin is nice and relaxed. Liver function appears to be improving.
Kidneys still aren't keeping up. Worse case for the kidneys is that we will
have to start a round of dialysis. This is not something we would look forward
to, but isn't too extreme.
Best news for today is that they think they know what caused the initial fever. Para Flu. Apparently a very common cold virus. For whatever reason, Collin's immune system went haywire. Doctors are hopeful that once his body has overcome the virus, it will start restoring liver function (with kidneys to follow). We can then start considering taking him off of sedation.
We really appreciate and value all the thoughts and prayers. We will try to keep everyone updated as best we can as we continue to wait patiently for definitive answers, improvements, and ultimately for Collin to wake up to be the happy little boy he is.
Thanks - Micah, Chet, and Collin
OLD COLLIN UPDATES
10/11/06: 11/6/06: 11/9/06: Now I know they're just doctors trying to make us as
prepared as possible, and it is amazing that they can see all these things inside
of Micah, but Collin has proved much of these concerns wrong. From the beginning
he could breath on his own, and boy, you should see him when he's mad. He screams
up a storm and his little arms and legs kick like crazy. He's been able to control
his heart rate very well. His heart rate, breathing rate and oxygen levels are
perfect. The latest ultrasounds on his heart were completely normal. His kidneys
are a little small, but well within normal. We started feeding him yesterday
and he's figured that out without any problems (hasn't tried Micah yet because
of his surgery). He doesn't open his eyes very much, but when he does there
doesn't seem to be any problems. He looks around and doesn't like people shining
lights in his eyes. He definitely can hear (hopefully all the nail guns, saws
and hammering at home hasn't affected him too much). His jaw is a little small
but I certainly don't have a manly jaw either. His head is a little small too,
but it is proportional to his body. Micah and I have small heads too, so it
should be normal for him. The spina bifida surgery went very well. Early indications
are that he seems to have full movement of his legs and feet. We can't say that
there isn't any nerve damage, but then there's really nothing yet to say there
is. The spina bifida was a little smaller than they thought and it could be
repaired. One thing that has been very encouraging is that there hasn’t
been any indications yet of hydrocephalus (long word meaning fluid collecting
in the brain). About 90% of children with this type of spina bifida have it.
If he has hydrocephalus, he would need a shunt placed in his head which is routed
from the brain to the abdominal cavity. The shunt would be permanent, except
when it needs to be replaced for his growth. So each ultrasound that tells us
hydrocephalus is not developing makes us very happy (even Collin cheers). We're
a long way from knowing if he will develop hydrocephalus, but so far the news
is good. Now with all that good news about spina bifida, we still
have the Tetrasomy 18p to deal with. There's really little known about this
chromosome disorder, especially since each case differs, that we're just in
for the ride. I'd say at this point for a 3 day old kid he is pretty smart.
He knows Mom and Dad, and he knows what he likes and doesn't like. If you looked
at Collin, you would not have any idea that his chromosomes have issues. Anyways, I’ve been blabbing (or bragging about
our boy). Micah and I are doing well. Micah is recovering nicely and we have
a very nice place to stay for the next 2 weeks thanks to the Ronald McDonald
House. Thanks everybody for any and all support you’ve
provided. Even if you think you’ve done nothing to help, just reading
this and caring is help. 11/16/06: 1/5/2007 Happy New Year! It has been awhile since we updated Collin's page, but we had
a wonderful series of holidays, starting with Thanksgiving, Christmas, and then
New Years. We stayed at home for each of them, thoroughly enjoying our families
coming to visit. Collin thanks you for all the attention! As for Collin and his health, it has been good for the most part. We have had
some concerns about his hydrocephalus and possibly having surgery for a shunt,
but he has special powers that spontaneouly drain the extra fluid, preventing
the need for surgery for now. It will be a possible concern that we will continue
to monitor, but we are happy to currently avoid it. Although the hydrocephalus
is stable, Collin came down with a fever on January 2nd. We took him to the
doctor on Wednesday the 3rd to find out that he was fighting something, but
nothing apparent like a cold or flu. So Collin's Dr. sent us to Children's to
find out exactly what was wrong. Eventually they figured out that he has a Urinary
Tract Infection. Nothing too serious, but something that has kept him in the
hospital and on IV antibiotics for a couple days and a few days to come. He
is still himself entertaining us and letting the hospital staff adore him. So
we will be at Children's Hospital for the Seahawks playoff game against the
Cowboys! Maybe Collin will escape from the hospital and find a big screen tv
to watch the game on, since he does like to watch football. 4/15/2007 Wow it has been a long time since we updated this webpage!
It is amazing how busy we get with a 5 month old and working on our house addition!
For those of you that haven't seen Collin, he is still doing fabulous! He is
going on 14 pounds and started eating rice cereal a couple weeks ago, and we
should start some vegetables here in a couple days! He is the cutest little
5 month old I know! He smiles at everything, as long as his teeth aren't bothering
him too much! He started to teeth, and chews on everything in sight, especially
his fingers. The biggest challenge is to try to fit his whole fist in his mouth.
He can get all four of his fingers in, but not quite five. We plan to update
the pictures and videos this week, including a video or two of him eating! 4/25/2007 Collin does like vegetables! We've updated the pictures
but not the videos yet. I have about 3 videos I'm working on and they should
be up soon. We have some good pics and vids of him eating and laughing. Occasionally
he giggles and we got some little giggles on video. Things are still going good.
I hope everyone is doing well. I am thinking of you all often & miss you. Almost every single one of you is in a different place in the country right now, but know that you are in my thoughts often. We have tentatively scheduled a c-section for Monday Nov. 6th at UW medical center (or sometime that week dependent on the multiple doctors involved for the c-section and surgery afterwards). The schedule of events after a morning cesarean is completely unknown and dependent on my stability and our baby boy. As for our boy, currently he is still growing and seems healthy for what we can tell with him inside me. It is still completely unknown how stable or what kind of difficulties he will have once he is born. As many of you know, he has spina bifida (a hole in the lower area of his spine) and a rare chromosome disorder called tetrasomy 18p. Both pose separate challenges in themselves that we will learn and handle when he gets here. If things go well and he is stable, he will under go surgery for the spina bifida sometime in the first couple days at Children's Hospital in Seattle. Just so you know I am going to include each of you on a group email to be sent with an update sometime in the days after he is born and we know a little more, whether it be a best or worst case scenario. It won't be Chet or I emailing, although it may be from my email account, it will be someone I have asked to be there while I recover from my cesarean, while Chet follows the baby wherever he may be or go for surgery. Sorry that this is not the happiest of news to hear, but I thought each of you should or would like to know what is going on.
Lots of love - Micah
Chet and Micah are parents!! At 10:59am Micah gave birth to a baby boy! He is 5lbs, 15oz. Mom and Dad have not decided on a name because they want to see him and make sure the name fits:)
Baby Doughty came out crying and is currently in the NICU. Micah looks great and is doing well - and Chet is proud he didn't pass out!
The baby is doing well now. The next step is to repair the spina bifida. Timing is uncertain so we'll keep you posted.
The family is so grateful for your thoughts and prayers!
Hey Everyone its Chet,
I'm not sure when you last had an update for baby Collin. Well, I'm glad to say that everything has gone much better than what anyone was expecting. Throughout the pregnancy it seemed that every doctor's visit brought up some new problem (besides the spina bifida and Tetrasomy 18p). We'd hear "the baby isn't growing well", "the head is too small", "we're not sure how the lower brain stem is developing", "we're not sure if he'll be able to breath on his own, or regulate his heart rate, or if he will be able to feed", "the last ultrasound we found that his jaw is very small and we're very concerned that it will prevent him from breathing and that we won't be able to get a breathing tube in", and "his heart looks a little big".
Everything is still going well. Collin hopefully will have his urine tube removed today. The hydrocephalus has not shown up yet which is very encouraging. He is eating well and is a very happy, quiet baby. He's been opening his eyes a lot more and is checking things out. He is very handsome and Micah and I are really excited to get him home. There are some really fun hats at home waiting for him.
It looks like we might be going home this Friday. We can't believe it has already been ten days since he was born. Time has gone very quickly. I had brought several books to read, but haven't even touched any of them. I barely have time to type this (in fact, I'll be in trouble with Micah because I am supposed to wake her about minus 15 minutes ago.) I'll do my best to update people more.
Now I know they're just doctors trying to make us as prepared as possible, and it is amazing that they can see all these things inside of Micah, but Collin has proved much of these concerns wrong. From the beginning he could breath on his own, and boy, you should see him when he's mad. He screams up a storm and his little arms and legs kick like crazy. He's been able to control his heart rate very well. His heart rate, breathing rate and oxygen levels are perfect. The latest ultrasounds on his heart were completely normal. His kidneys are a little small, but well within normal. We started feeding him yesterday and he's figured that out without any problems (hasn't tried Micah yet because of his surgery). He doesn't open his eyes very much, but when he does there doesn't seem to be any problems. He looks around and doesn't like people shining lights in his eyes. He definitely can hear (hopefully all the nail guns, saws and hammering at home hasn't affected him too much). His jaw is a little small but I certainly don't have a manly jaw either. His head is a little small too, but it is proportional to his body. Micah and I have small heads too, so it should be normal for him.
The spina bifida surgery went very well. Early indications are that he seems to have full movement of his legs and feet. We can't say that there isn't any nerve damage, but then there's really nothing yet to say there is. The spina bifida was a little smaller than they thought and it could be repaired. One thing that has been very encouraging is that there hasn’t been any indications yet of hydrocephalus (long word meaning fluid collecting in the brain). About 90% of children with this type of spina bifida have it. If he has hydrocephalus, he would need a shunt placed in his head which is routed from the brain to the abdominal cavity. The shunt would be permanent, except when it needs to be replaced for his growth. So each ultrasound that tells us hydrocephalus is not developing makes us very happy (even Collin cheers). We're a long way from knowing if he will develop hydrocephalus, but so far the news is good.
Now with all that good news about spina bifida, we still have the Tetrasomy 18p to deal with. There's really little known about this chromosome disorder, especially since each case differs, that we're just in for the ride. I'd say at this point for a 3 day old kid he is pretty smart. He knows Mom and Dad, and he knows what he likes and doesn't like. If you looked at Collin, you would not have any idea that his chromosomes have issues.
Anyways, I’ve been blabbing (or bragging about our boy). Micah and I are doing well. Micah is recovering nicely and we have a very nice place to stay for the next 2 weeks thanks to the Ronald McDonald House.
Thanks everybody for any and all support you’ve provided. Even if you think you’ve done nothing to help, just reading this and caring is help.
Happy New Year! It has been awhile since we updated Collin's page, but we had a wonderful series of holidays, starting with Thanksgiving, Christmas, and then New Years. We stayed at home for each of them, thoroughly enjoying our families coming to visit. Collin thanks you for all the attention!
As for Collin and his health, it has been good for the most part. We have had some concerns about his hydrocephalus and possibly having surgery for a shunt, but he has special powers that spontaneouly drain the extra fluid, preventing the need for surgery for now. It will be a possible concern that we will continue to monitor, but we are happy to currently avoid it. Although the hydrocephalus is stable, Collin came down with a fever on January 2nd. We took him to the doctor on Wednesday the 3rd to find out that he was fighting something, but nothing apparent like a cold or flu. So Collin's Dr. sent us to Children's to find out exactly what was wrong. Eventually they figured out that he has a Urinary Tract Infection. Nothing too serious, but something that has kept him in the hospital and on IV antibiotics for a couple days and a few days to come. He is still himself entertaining us and letting the hospital staff adore him. So we will be at Children's Hospital for the Seahawks playoff game against the Cowboys! Maybe Collin will escape from the hospital and find a big screen tv to watch the game on, since he does like to watch football.
Wow it has been a long time since we updated this webpage! It is amazing how busy we get with a 5 month old and working on our house addition! For those of you that haven't seen Collin, he is still doing fabulous! He is going on 14 pounds and started eating rice cereal a couple weeks ago, and we should start some vegetables here in a couple days! He is the cutest little 5 month old I know! He smiles at everything, as long as his teeth aren't bothering him too much! He started to teeth, and chews on everything in sight, especially his fingers. The biggest challenge is to try to fit his whole fist in his mouth. He can get all four of his fingers in, but not quite five. We plan to update the pictures and videos this week, including a video or two of him eating!
Collin does like vegetables! We've updated the pictures but not the videos yet. I have about 3 videos I'm working on and they should be up soon. We have some good pics and vids of him eating and laughing. Occasionally he giggles and we got some little giggles on video. Things are still going good.