The eye doctor dilated his eyes anyway and we waited 20 minutes until they were completely dialated. Then the doctor took a look in his eyes. He said everything from that test looked fine. The doctor then took a look at Samuel’s MRI and said that all the areas of the brain associated with hearing looked fine. Well, Samuel started to wake up so the doctor put a little mobile in front of his face to see if he would focus on it. He didn’t because he was still half asleep. From that, the doctor concluded that he probably has some cortical vision impairment meaning that although his eyes are seeing the message may not be making it to the brain correctly. He said that many times that can be corrected with therapy.

I wasn’t real impressed with that last test. I thought it would have been much more effective and useful if Samuel had actually been AWAKE! But oh, well. I know that Samuel can see. It just seems like it’s difficult for him to focus on things sometimes. But if he wants to, he does. So I think it’s just going to be a matter of time and practice before his vision is totally fine.

Other than that, we spent most the day in Samuel’s room. He was pretty upset a good part of the day and we gave him clonadine at least twice more before his bedtime dose. The speach therapist did come by and try to feed him something just to see how he would react. She brought chocolate pudding, though, which was a mistake. Samuel really doesn’t like chocolate - he won’t drink chocolate milk to save his life. I know, that’s strange. But like all the doctors keep saying, “Samuel is just not typical.” So she tried some applesauce, which he seemed to like more and a popsicle, which seemed too cold. He didn’t swallow or anything, just let it linger in his mouth. She’ll be back tomorrow to try again. We just want to get his mouth used to food because I guess he’s scheduled for a swallow study and he won’t like that if he isn’t used to having food in his mouth first.

We also went to physical therapy at 4 pm. But I have given into giving him a dose of clonadine at 3:30 because he was just so upset. So he tried to sleep through therapy, but we just wouldn’t let him!

Last of all, his feeds are now up to nearly 100 cc’s per hour from his regular 50. And he seems to be tolerating them fine - unless that’s what’s making him mad instead of the new cast on his right arm. Once they reach 100, they will stop his feeds and start feeding him in boluses of 300 cc’s four times a day. And if he tolerates that and passes the swallow study, they won’t do the nissen. Instead, they will just do the g-tube.

Still no results from his EEG. His “seizures” seem to be getting worse sometimes and I’m not sure why. He has also started biting his tongue during them and gagging which makes me worry that he will throw up all these new feeds in his stomach and aspirate them. I have asked them for the results everyday now and they just keep saying they’re understaffed “down there”. Hopefully, we’ll get them tomorrow.

Keep the prayers coming. We sure need them. I know this sounds funny, but sometimes the really good days make me apprehensive of what the next day will hold. I guess I just really get my hopes up when he has a really good day and the next day is usually a disappointment because it’s not so good. Let’s hope for lots of good days in a row in the near future.

Love,
Teresa, Tom, Samuel & Boys

Around 10:30 am, we went down for a hearing test. They tested his ear drums to make sure they are working right and they are. Then will probably test whether the sound is making it to his brain stem when they do the G-tube surgery because he has to be sedated for both of those. Tomorrow, he has an eye test.

Then he had a nice nap from about 1 pm until 4:30 pm. During the nap, one of his physical therapists came and took the cast off his left arm, made a splint for it and casted his right arm. When the other physical therapist came to get him up for therapy, he was NOT happy. He had about 45 minutes of therapy all the while expressing his great disapproval! When that was over, we headed back to his room.

I’m not sure, but I think he is really mad about that cast on his right arm. He keeps moving his arm around and looking at it as it passes his head and getting really upset. I think he wants that right hand back by his face and just can’t get it there. Even tonight as he fell asleep it upset him. He was nearly asleep and he suddenly just started screaming because I’d put a pillow near his head so he couldn’t get that casted arm clear up to his ear. (It just didn’t look comfy.) As soon as he started screaming, I moved the pillow, rolled him on his other side so the offending arm was stuck under him and he fell right to sleep within about 2 minutes. It’s going to be a LONG week or so until that cast comes off!

They also pulled his NJ tube back a bit so it is no longer in his intestine but is now in his stomach. They have kept the same drip feeds all day and he has had no problems with them or his meds going directly into his stomach. That’s good.

They reduced his traxene today and increased his baclefin pump. They just want to get him as awake as possible without increasing his posturing.

So that’s about it and I’m tired! Hopefully tomorrow he’ll forget about that cast on his arm and have a nice day. But probably not. He is, afterall, 2 years old!

Love,
Teresa, Tom, Samuel & Boys

We haven’t heard back about the EEG yet. We also didn’t get to change the cast from his left to his right arm because the woman that needed to make the change won’t be available until tomorrow.

I took him for a ride about 11:30 am because he was in such a good mood. By about 12:15, he was a little upset so I took him back for a nap. (I guess some things never change!) He took tranxene at 12:15 and was sound asleep within 20 minutes. But we opted to also give him the clonadine so he would sleep longer. He slept until 4 pm when we finally woke him!

At 4pm, he went for physical therapy. It was the best session he’s had. Not because he was happy about it - because he usually isn’t - but because he was so relaxed. They didn’t really even have to “fight” him through the whole session. His body just moved the way they wanted it to. They kept saying, “Is this the same body we were working with last week?” It was great. And the funnest thing was watching how hard he tried to focus on his Aunt Kaylee. He sure has a thing for her and made a lot of eye contact with her today. I think that time he threw up on her really bonded them!

My dad watched him this evening while I went to dinner with Aunt Kaylee and Grandma Bird. He was even good for Papa (my dad). And when I got back, we rocked in the rocking chair together. I brought his favorite blanket with me today and when I showed it to him, he focused right on it. I asked him if he wanted it and then put it in his hand. He had been figiting in the chair and didn’t want to lay his head down. But as soon as that blanket touched his face, he put his head down on it and relaxed away. His heart rate was down in the 90’s, but he was awake!

He just fell asleep (it’s 9 pm) after just a dose of traxene. I put him in bed and asked him if he wanted his “blankie”. Then I put it by his face and underneath his arm and he calmed right down. I am absolutely sure he recognizes it and it glad to have it here!

They are not going to do surgery on him tomorrow. The surgeon got back in town today and looked at his tests for reflux and isn’t convinced that he needs the nissen. The rehab doctors, however, do feel he needs it. They both gave me their reasons for doing or not doing it and I was left to feel like I didn’t want it done, but I was afraid of him getting aspiration pneumonia at some point down the road. I really trust two of my rehab doctors, so I told them to work it out with the surgeon and let me know what they decided.

They came up with a compromise. They are going to pull his NJ tube that is running through his nose and into his small intestines back out a little so it runs into his stomach. Then they are going to try to feed him through that and see how he does. If they feel he is more agitated or if he seems to be throwing up or gagging or aspirating or refluxing, then they will do the nissen and the g-tube. If not, they will just do the g-tube.

The only draw back is that it will extend our stay here a little bit. But I think that is worth making sure he needs the nissen before we do it.

Keep praying hard!

Love,
All us Jewkes

One great thing he’s been doing today is moving his head on his own. I haven’t really seen him do that before except maybe once or twice. But he did it a ton today. And it was movements like trying to get away from mommy’s kisses or the bright light the nurse wanted to shine in his eyes. It was a strange sensation to be holding him and have him just turn his head. I’ve gotten used to it staying right where I put it.

He is also tracking things and focusing much better than before. The doctor this morning even mentioned how well he had looked at her and tracked her and she hadn’t seen that before. Of course, we’ve seen him do that before, but I can see a real difference today over the last nearly 6 weeks. It is VERY encouraging.

Tom, the boys & I all went to church on the 3rd floor of Primary Childrens’ Hospital today. It’s such a blessing to be able to go and take the sacrament each Sunday by just going up a flight of stairs. It’s “come as you are” services which is also a good thing since most people don’t really know ahead of time that they are going to be here or for how long. They always have a very nice service.

Last week at church they read the dedicatory prayer given for this hospital in 1990 by President Gordon B Hinckley. He blessed that it would be a place of healing, peace, refuge , learning and a place where the holy spirit would be felt. He blessed all those who would minister to the needs of the children. And then he said, “May thy spirit hover over this institution…now and through the years to come, for the blessing of many, to Thy name’s honor and glory.” That last sentence really struck me because I have felt the spirit more in this hospital in the last 6 weeks than I think I have in my entire life. It is so powerful here and brings such peace to all of us who are struggling through trials here. I even had a nurse tell me she had jokingly told her bishop she was changing religions to the Church of Jesus Christ of Latter Day Saints at Primary Childrens’ hospital because she has been so touched by the spirit here so many times.

The kids and Tom and I got to take Samuel for a walk today, and the kids were really cute to sit and talk to him. He seems to be interested in them being here with him. It will be nice to get him home where he AND I can see them more.

Thanks again to everyone. I just can’t say it enough. Keep him in your prayers. I am seeing improvements everyday - slow but sure. Sometimes that’s how God works. It’s definitely a trial of faith. So keep up the faith that he will get well.

Love,
Tom, Teresa, Samuel, Tanner, Wesley & Ben

Tom and the boys came down this morning and after visiting with Samuel for a bit, the boys and I headed off to the Salt Lake Childrens Museum. Tom is great to be willing to sit with Samuel all day while we go off to have some fun together. We spent most of the late morning and early afternoon at the museum. It was fun and there was quite a bit for the kids to do. We painted their faces and made “magic wands” after watching the magic show there. We even made one for Samuel. We figured it definitely couldn’t hurt.

Tom said Samuel had a good day. Saturdays are pretty relaxing around here since all the doctors and residents are off duty. Dr. Gooch did stop by for a few minutes, but there were no pokes or prodings or even physical therapy today. It was just a nice relaxing day for Samuel.

He did take a nap for about 1 1/2 hours today and then he actually fell asleep at about 5:30 pm and hasn’t been awake since. Hopefully, he will still sleep OK tonight.

The little bit of time that I did see him this morning, he was wide awake and really looking around. He has seemed so much better to me the last few days and it is very encouraging. He does have a cute little trick he does. I figured out that the little hat on his highway patrol bear comes off. So I will have him watch me take it off and then I will put it on my head. After a few moments, I take it off my head and put it on his head. His eyes look up as far as they possibly can every time I do that like he’s trying desperately to see that little hat on his head. It’s really cute! He did it for the first time yesterday and I let out a loud laugh. All the nurses looked in the room like I’d gone wacko and was entertaining myself. But it was so unexpected that I couldn’t contain the laugh. It made my day!

This next week will be filled with lots of work as we try to figure out all the equipment he will need at home and how to get it there. There are even basic things such as what kinds of car seats do they have for us to get him home in because I don’t think he’ll tolerate his regular one. We also need to get some nursing care set up for nights. And there is going to be a lot of training involved for his g-tube. I also want to take the CPR class they offer here along with learning how to “bag” him and suction out his throat if he needs it. In addition, he is still scheduled for surgery on Tuesday.

But, once we get home, I really want to start working him and stimulating him as much as possible. We have to be careful because too much going on at once is very difficult for a brain injured person to handle. The rest of us can tune out background noise. But everything a brain injured person hears attracts the same amount of their attention. So they always feel overwhelmed. That means he needs lot of attention, but one thing at a time. I know it will work, though, because I already see a lot more awareness just from spending a little time each day reading books and letting him hold things in his hands.

Thanks for all the prayers! Don’t stop them coming!

Love,
Teresa, Tom, Samuel, Tanner, Wesley & Ben