The doctors rounded this morning and told me that they are keeping his level of Baclefin at 1325 for a few days because they are getting a little nervous about raising it. They have only had one other patient at a higher level than he is at and that patient took years to be raised to that level. We feel good about keeping Samuel at this level because we can deal with it each day even though it’s not fun and it can’t go on forever. We feel like we should wait a few days and see how things go.

Samuel’s braces for his legs came 2 days ago and I put one on his bad ankle today for a few hours to give it a good stretch. He didn’t seem to mind it much, so we will probably do that a few times each day.

He is loosing range in his elbows and shoulders, which is really concerning. They are probably going to soft cast one of his arms tomorrow and recast it every day to try and get the range back. Once they do that arm, they will do the other arm and vice versa to try and keep the range in them. He is also loosing some range in his fingers, but there is not too much they can do about that right now.

Tomorrow they will do another test on him to see if he has reflux. They did a test yesterday where they put some metal solution into his stomach to see if he would reflux it into his esophogas and then they x-rayed his stomach & esophogas. They did see some reflux, but not much. This new test will require a tube going down the other side of his nose and into his esophogas to measure the acidity in there which can tell them whether or not he is experiencing reflux. They think he may be because his posturing is so bad and they just want to address that issue at the same time as the G-tube (feeding tube) they want to put in his stomach. If they can address them at the same time, it will be one surgery instead of two.

They also had a sleep apnea doctor come and look at him after I got the doctors to watch him as he falls to sleep. They think that the apnea he is experiencing is caused by some damage to his brain stem. They don’t necessarily want to have him wear a cpap machine because they think it will be too uncomfortable and he will just never sleep. They just want to make sure he isn’t causing any more damage to his brain with the apnea by not getting the right amounts of oxygen and cabon dioxide in his blood. So the “sleep doctor” is going to watch him fall to sleep tonight and then probably will do a sleep monitoring test on him while he sleep tomorrow night. Then we will decide if he just needs oxygen while he sleeps or what. 

Love,
Teresa & Samuel

At 11:30, we tried clonadine with his melatonin and oral baclefin. Still no sleep. At 2 pm, they gave him trazine and at 3 pm clonadine. He dozed off at 3:30, but it is a very light sleep and I’m afraid it isn’t going to last long at all. We’ll see.

I did get to talk to the nurse that had stated that she had never seen a near drowning patient not come out of the posturing. She worked at South Davis for 8 years and has been at Primary Childrens for 9 years. She said she saw a little boy when she first got here that was a near drowning much like Samuel. She said at that time, they didn’t have the baclefin pump and nothing seemed to work for him. She remembered one shift where she and another nurse tried their best to hold him in the fetal position to break his posturing. It didn’t work very well and they saw his heart rate soar to 300 beats per minute. She said it was awful, but that it eventually subsided. She couldn’t remember how long it had taken, but she wanted to say it had just been a few months before it subsided. Once it did, she said he did very well.

I also spoke with a social worker about South Davis and she said she feels it is a good facility. (The nurse earlier had agreed.) They have an entire pediatric section, so it isn’t like Samuel will be in a nursing home where they have no experience caring for young children. However, Tom and I are definitely going to visit South Davis to see for ourselves. We want to make sure Samuel’s care will be adequate until he is ready to return here for acute therapy.

Samuel was more awake today than I have seen him since the surgery. His eyes were wide open for quite some time and we read books and talked. (Well, I read books and talked - poor kid!) He seemed to like the books and his eyes would move from page to page as I turned them. He even seemed to like the little bit of playing that we did. But he could only pay attention inbetween the posturing, but it was nice. We haven’t seen the smiling and laughing that we’ve seen before, but we are confident they are still there. Samuel just doesn’t feel well enough to share them right now.

The last thing I wanted to mention was that yesterday after they raised the level of baclefin in his pump, he started breathing strangely as he fell to sleep. He would basicaly stop breathing as he fell asleep and then wake himself up at the “last moment” and take a few deep breaths and do it again. He did that at about 4 pm and then again at about 6 pm and then again at bedtime. It’s pretty scary, but the nurses seemed to think there was nothing to worry about as long as his other stats were fine and as long as he was waking himself up to breath.

Keep him in your prayers. He needs them everyday! We love you all!

Love,
Tom, Teresa & Samuel

The test they did on his digestive system was to help find a more permanent way of feeding him. The NJ tube that goes down his nose and into his intestines has been working well, but can cause erosion of his throat where the tube sits if it’s used too long. So they want to put a tube through his abdomen and into his stomach that he can be fed directly through. This would also mean that he could be fed 3-4 times a day and it would just take a few minutes where right now he is constantly hooked to a feeding machine and a slow continuous drip is running into him. The new tube would make it much easier to keep him fed without the hassle of having a machine to cart around for it.

The other issue is whether or not to suture a fold of skin over his esophogas. This would allow him to drink liquids still, but it would not allow him to throw up. The fold of skin allows things to pass through it on the way down, but not on the way up. That way he couldn’t throw up and aspirate or choke on it. The test they did will let them know if he has any reflux or not. But even if he doesn’t, the doctor suggests that he still have that fold of skin sutured in his throat because children with extreme posturing tend to agitate their stomachs often and throw up quite a bit.

They also took his stiches from his surgery out today. And they are talking about finding his a sub-rehab facility that he can be in until his posturing stops and he is able to handle an acute rehab facility. Basically, Primary Childrens is an acute rehab facility and children here need to be able to benefit from at least 3 hours of therapy each day in order to stay. A sub-rehab facility will take children who can’t handle that amount of rehab each day and will administer whatever amount they can handle until they are ready for the acute rehab facility. So we are trying to find out what options we have and where we want to take Samuel until his posturing subsides and he is able to come back here for the acute rehab. They suggested South Davis, but we would obviously prefer something closer to home.

Last of all, the little braces for his legs came today. I don’t know if I mentioned them, but he is loosing range in his ankles so they have fitted his feet with braces that allow his feet to be stretched for a longer period of time than just us holding his feet in place. They also put some more botox in him. This time, they put it in his biceps, his left calf and his lower back. We’re hoping that will help his posturing and mostly give us more range in his elbows as he is loosing some from always having his arms postured in the same position. They are also making him a custom wheelchair that will fit him better and support his head better.

Tom headed home with the kids today and I will be home on Thursday unless something drastic changes to attend the benefit dinner at the Copper Mill.

Thanks again for everything! Keep up the prayers. We still feel really good about his recovery. We just feel it’s going to be a long process. Patience is a virture we’re all about to acquire!

Love,
Tom, Teresa & Samuel

Samuel has been awake since 11 am. The clonadine doesn’t seem to be enough to put him to sleep on its own anymore. But he does sleep when it is given with tranzine. So we will have to try and work those doses together at bedtime and naptime. We also decided that the sinimet is upsetting his stomach. He has thrown up about 5 times since he started taking it and he didn’t throw up once before that. So we are switching him to a similar medication instead. Just FYI, when he throws up, it is just stomach acids that come up since his feeding tube runs directly into his intestines and they don’t put anything into his stomach at this point. It is scary to have him throw up anything it all because we don’t want him to aspirate it and get pneumonia, but we don’t have any indications that he has done that thus far.

He is much more awake than he was in the ICU because he is on much less sedation. But the doctor did indicate to us that he is still on a lot of medications that will make him groggy and confused. We have noticed that his eyes tend to be more like a 2 or 4 month old’s eyes. He has a hard time focusing on things that are far away and sometimes has a hard time keeping control of his gaze. But that could be in great deal a result of the medications he is on.

The doctor held off raising the medication in his pump yesterday and only raised it 100 micrograms today. They are getting a little nervous about raising it because they normally don’t have kids on this high of a dose and they aren’t sure what side effects could occur. But they can definitely see that he stills needs an increase in it.

The doctor also indicated to us that the nurse in charge of the baclefin pump patients works at South Davis and told her today that she has never seen a child with a brain injury not come out of this stage of posturing. That definitely peaked our interest and we will ask her more questions the next time we see her.

Otherwise, all is about the same. My sister, Kaylee, has set up with her baseball team and a local Chevron station to hold a car wash for 2 hours this coming Saturday and have all the proceeds donated to Samuel’s fund. I will find out the exact details before them and post them on the site.

We sure appreciate everyone and all that you are doing to help us. We couldn’t do this without you. We love you all and appreciate your more than generous support! We love you!

Love,
Tom, Teresa & Samuel

Two nights ago (the night after we went to the zoo), he didn’t sleep much at all. That’s why we opted to keep him asleep for most of yesterday. Last night, however, he slept very well according to his nurse. He did throw up at about 1 am and then again at about 8 am. It was just stomach acids that he threw up, and we are pretty sure it is the Siminet that is making his stomach upset. We are going to ask his doctors about giving him something to help his stomach with that.

He has been awake since 8 am this morning despite 2 doses of clonadine that we were hoping would give him some rest and some melatonin that he received at noon. His eyes are wide open most of the day today and he is much more awake than we have seen him in about 10 days or so. That’s nice to see, but we wish he would nap so he doesn’t wear himself out.

He received a beautiful blessing from his grandfather on Thursday night and we are feeling very confident that he will continue on this track of slowly getting better. Just a funny note, he has actually gained weight since we got here. He’s not used to eating as consistenly and as much as they are feeding him here. (You know how 2 year olds eat!) So he has gained 4 pounds in the last month. it can’t be bad for him though, since he was a little on the skinny side.

We are just working now on finding the right dose of baclefin in his pump and the right combination of other medications to get his posturing totally under control so he can start some more intense therapy. His heart is still having some issues such as some extreme bradying when he is upset. (That means it will drop from 150 to 40 beats per minute in just a few seconds.) It always picks right back up, though, so they haven’t seemed too concerned. He also did a strange thing on Thursday where he would start to fall asleep and hold his breath. That would wake him up and he would start to breath again. He did that for about 15 minutes and hasn’t done it again. They think it must have been a reaction to the combination of medications he was on at the time. But it was unsettling.

Anyway, that’s all for today. We will for sure post again tomorrow. It’s nice to see him suffering less than before. But he still isn’t anywhere near a point where we would feel comfortable taking him home. Hopefully, that will come sooner than later.

Keep up the prayers! They are helping incredibly! We love you all and thank you for your faith. He is going to be OK, it’s just going to take a long time. Everything happens on God’s timetable whether we like it or not. But we are so very happy with the miracles we’ve received so far and feel as if we are watching the greatest miracle of ever slowly unfold before our eyes. It’s so incredible even though it’s hard.

We love you all!

Love,
Tom, Teresa & little baby Samuel