We think that he first had signs of the RSV early Tuesday morning (about 1 am) when he awoke with a fever. RSV usually peaks at about day 4 or 5. So we are getting close to that timeframe and Samuel actually seems to be getting better, rather than worse. So we will most likely head home sometime tomorrow.

Lastly, the dietician (sp?) stopped by this morning and said she was concerned because Samuel had lost weight since he went home. She wanted to increase the food he was getting to help with that. I was happy to see her and also spoke with her about the fact that Samuel has now broken his leg and his tooth in situations where his bones should have held up. She agreed and also suggested adding some calcium and other vitamin supplements to his diet. That sounded good to me. It did make me upset with our rehab doctors, however, since I voiced my concerns about Samuel weight probably 2 months ago and they didn’t seem like it was any concern. They never weigh him when they see him, so I made them do it once just so they could see how much he had lost. But they said his weight seemed fine and wrote us off. I told the dietician that and she seemed fairly surprised about it. She said he needs to weigh 26 to 28 pounds and he currently weighs about 22 pounds. That doesn’t seem like much difference, but it is when you’re missing 20% of your necessary weight. Anyway, I will definitly speak to our rehab doctors when I see them next and let them know I’m not happy they didn’t refer me to a dietician sooner!

So, that’s it for now. It looks like Samuel is handling the RSV and pneumonia and doing it well. Let’s hope it stays that way. Keep the little guy in your prayers!

Love,
The Jewkes

It took until nearly 2 pm before we were admitted to a room. In the meantime, they ran blood cultures, took urine samples, x-rays, secretion samples and even a spinal tap to try and figure out what was causing Samuel so much upset. Just before moving us to our room, they informed us that Samuel has RSV along with a slight aspiration pneumonia. They placed him on a new antibiotic that works well for aspiration pneumonia. But RSV is a virus and cannot be treated by antibiotics. It will simply have to run its course and we will have to hope that Samuel can hold his own through it.

Samuel’s fever finally broke around 1 pm though the ER doctors NEVER gave him one cc of medication - not even tylenol! I don’t know what we would have done and what he would have suffered through if we hadn’t brought his medications from home and provided them ourselves. It was definitely frustrating and the worst service we have ever received in an ER.

Since his fever broke, Samuel has been pretty lethargic. We are back to his regular scheduled medications, except we did add 1/2 doses of his tranxene back to his schedule simple because he shouldn’t have to experience any withdrawals in the midst of all this. The dental team did come and look at his mouth. There is nothing they can do, or course, for basically missing tooth except watch to make sure what is left of it isn’t painful because a nerve is exposed. However, the 3 teeth surrounding that tooth are extremely loose and there is one that they fear he may loose also. They fitted him for a bite guard even though they were pretty certain he wouldn’t keep it in his mouth. I convinced them that something was better than nothing even if I had to hold it in his mouth when he is upset.

Samuel is still holding his food down and is also receiving some IV fluids. He is sleeping most of the time. His mouth looks so sore and he has some pretty yucky stuff coming out of his nose. He also sounds congested when he coughs. RSV is rampant here. Every room we pass, including Samuel’s, has signs on the door warning of infection and all the doctors and nurses wear gowns, masks and gloves when they enter each room, including ours. They say every room is full and RSV has been bad this year. Hopefully, it won’t be too bad for Samuel.

Keep the little guy in your prayers. It’s a lot for such a sweet boy to have to suffer, but everything is for a reason and will be for his benefit and ours in the eternities. Just pray he won’t suffer any more than necessary and that God will watch over him and care for him. We hope he gets better soon so we can go back home. For some reason, this isn’t our favorite place :-)!

Love,
The Jewkes

P.S. Tom has already headed back home with the boys - just so everyone knows they’re being taken care of.

All of today, Samuel was very, very agitated. And he couldn’t be calmed or consoled. Tom finally suggested that we take him to the doctor, so around 6 pm, we did. On the way to the doctor’s office, Samuel became more agitated than I have seen him in months and months. In the 20 minute ride there, he chewed up both his checks, his bottom lip, one side of his tongue and he chipped off more than half of one of his bottom teeth. Yes, you heard right. He looks like a 6 year old who just started loosing his teeth because one of the teeth right in the middle of the bottom of his jaw is now mostly missing! I bawled over that one!

When we finally arrived at the doctor’s office, we asked them to give something to calm him since I hadn’t brought anything with me. (STUPID, HUH?!) But his next meds weren’t due until 9 pm, so I hadn’t thought of it. Well, the didn’t really have anything in the doctor’s office, so we hurried down the hall to the ER. There they gave him 2 doses of versed, which after about 40 minutes finally put him to sleep. They then listened to his lungs and though they didn’t hear much, opted to put him on antibiotics just in case. His ears and throat also looked fine. After a 20 minute nap, Samuel was back up and agitated, though not quite a bad as before. So we packed up and headed home.

It took a 1/2 dose of clonadine and a 1/2 dose of ambien to finally get Samuel to sleep around 10:30 pm. He is still sleeping, but his apnea is pretty bad - probably because he’s had so much medication in the last few hours. He is on 3/4 of a liter of oxygen and he is still statting down around 90. (Normally, on 1/8 of a liter, he stats around 95-98.) He also had a fever of 101 despite alternating doses of motrin and tylenol for nearly the last 24 hours. We have started his antibiotics.

So, hopefully, he will have a peaceful night and things will calm down QUICKLY! I’ll write again Sunday unless anything changes. If you don’t hear from me, you can assume that he is slowly feeling better and we are getting on a happier track!

Pray hard that he can be peaceful, calm and happy!

Love,
The Jewkes

Samuel had a VERY good day today. The other boys woke us up at 6 am and hauled us downstairs to open gifts. Samuel was upset at first until we had the boys sit in front of him as they opened their gifts. Then he lay contently on the floor and seemed interested in all they were doing. After about an hour, he dozed off in the midst of the excitement. But once all the unwrapping was done, his eyes popped open again and we helped him unwrap his gifts. He was pretty content and sat on my lap and I took his hands and ripped the paper of his gifts. He seemed very interested in what each gift contained and especially interested in the new movies he got. It was fun to see his reactions!

We spent the rest of the day lounging and watching TV and just enjoying the day. Samuel dozed off a few times during the day and contently watched a few Christmas movies with us. He even seemed to get upset when we paused one of the movies to fix ourselves dinner. And for a short time in the afternoon, he played with his new “barn and animals”. He seemed happy playing with them and pretty interested in the little animals and the sounds they would each make.

Samuel was calmer today than we have seen him since his accident. He probably cried or postured a total of 30 minutes all day long! It was a VERY nice Christmas and so fun to just hold him on our laps as he relaxed for most of the day. He also seemed very aware today and just content with all that was going on. And all this despite the fact that he is now down to 1/4 his original dose of tranxene and we will discontinue that medication for good tomorrow.

Samuel’s leg seems to be doing fine and not causing him any pain or agitation. He did make sure that he ended hyperbarics with a bang! He bit both his checks, both sides of his tongue and his bottom lip during his last session. He also pulled his feeding tube out while he was in the chamber that day. What a stinker! Needless to say, we were not too disappointed to take a break from it for a bit :-). It was quite a taxing day!

So things will hopefully settle into a nice routine within the next few weeks. We are working with insurance to get more therapy and it looks like that will happen. So we will continue to do all that he and I can handle in a day. And each day is different depending on Samuel (or me :-)). But we are mostly excited to see him calmer and praying that will continue so he can start concentrating on bigger and better things than arching his little back!

We all hope you had a VERY, MERRY CHRISTMAS! And that you know how appreciative we are of all of you and so many others. Keep praying! We need it!

Love,
The Jewkes

One thing that I have noticed this week is that we are finally able to rock him to sleep or rub his face to calm him as he falls to sleep. It doesn’t always work, but most often it does. It is so wonderful to even have ways to calm him since it has been months since we have been able to do so.

Samuel got the cast put on his leg this past week and will have it on for about a month. He doesn’t seem to mind it much although it is really hard and does kick his other foot with it at times. So we are careful to keep big, heavy socks on both feet so he doesn’t hurt himself.

Today was one of the best days we have had with hyperbarics. I moved his car seat next to the window over the weekend. I did it so it would be easier for me to get him in and out of the car. Funny that I didn’t think to do it a long time ago. But today as we drove down to Murray, he was wide awake the whole time and didn’t cry once. He seemed to enjoy watching the scenery and cars go by. I definitely should have put him by the window a LONG time ago! Oh, well!

We have nearly weaned Samuel off his tranxene. We should have him entirely off it by the first of next week. That will basically leave him with taking a vitamin, suppositories and his keppra for his myoclonic jerks. We may try in the near future to see how he does without the keppra. But I am not getting my hopes up too high as I do see the myoclonus nearly everyday and I am assuming it will be worse without the keppra. But we shall see. We also started giving Samuel 5HTP which is a protein or herb that helps to calm. It seems to be helping him as he is a little calmer than before and that is without his tranxene. We also started giving him omega 3 fats once a day to try and help with his weight and to ensure he is getting enough fat in his diet since the brain is made up mostly of fatty tissue.

Otherwise, Samuel has good and bad days still. It seems to sort of run every other day. I’m not quite sure why. But even when he is upset, it is nothing like in the beginning. We watched a little video of him taken about 2 weeks after the accident and I must say that memories fade quickly and I soon forget just how awful things were. I would have paid a million dollars to have him doing as well as he is now when we were at that point. So we DEFINITLY can’t complain because he has come so far.

As hyperbarics ends, we are boosting up his therapy and will hopefully have therapy every day - even a few times each day. Samuel is finally getting to the point where he can handle that much stimuation in a day. So we are going to do all we can to help him continue to improve.

Thanks again for all the prayers. We are considering holding a fast for Samuel in the near future and will let everyone know once we decide. The more faith, the better! so we would love everyone to be involved.

Thanks again for all your support!

Love,
The Jewkes