Archive for September, 2005
September 6, 2005
September 6, 2005 | Updates
This is the second update for today. You can read the first one below. Because of the scheduled surgery (that we ended up skipping), physical therapy didn’t come for Samuel today. So we had a pretty slow day again. We did get x-rays of his hips again because I’m concerned that it really is hurting him when I stretch his left hip and I want to make sure it’s not out of joint.During the late afternoon, Samuel was pretty upset. I decided we could do upset just as well outside as inside. So we headed outside and spent nearly an hour and a half out there. He was much more content outside even with the cool breeze blowing. By the time we got back to the room, he was acting pretty sleepy. I left him in his chair and by 7:30 pm, he fell asleep on his own. They did give him his 8 pm tranxene and he has been out since. Hopefully, he will sleep better tonight. That was the plan when I kept him up most of the day. (I also had the doctor reschedule his tranxene every 6 hours at the full dose it was originally at. It really seems to calm him without making him sleepy. And he is much more upset without it.)
He’s so cute sleeping. I love watching him sleep because he is so relaxed. We’re getting excited to come home. I can even tell that Samuel wants to go. Hopefully being home will help him.
The two boys that started school today loved it! I’m so excited for them. It’ll be good for them to go each day. Thanks again everybody. We sure appreciate all the support and don’t know how we’d make it through without it.
Love,
The Jewkes
September 6, 2005
Updates
Just a quick update. Samuel slept from about 11 pm until about 5 am. Not the best night’s sleep, but better. He has been awake since and is just now trying to take a nap. But I don’t know if he’ll be successful or not. It’s about 2:30 pm. At least he will be tired by bedtime.The big news - no surgery. It has been so hard to try and make the decision of what surgery he should have. We have fasted and prayed about it and just didn’t know what to do. This morning, I finally decided that we would do the nissen and the g-tube so he could have a more permanent feeding method and not much possibility of aspiration. We went down for the surgery, signed the papers and met with the anesthesiologist. As I spoke with him, he was concerned that they would have difficulty doing the nissen by laproscopy because of where Samuel’s baclofen pump sits. So he called the surgeon in.
Dr. Schaff looked at the placement of his pump for a few seconds and confirmed that the only way to do the nissen would be to make a 4-5 inch incision just below the center of his ribs and down to his belly button. I just about cried. He looked at me and asked me if that changed my decision about the surgery and I said I didn’t know but I needed a few minutes. In two seconds, the surgery had gone from being a couple small incisions 1/4 inch long each to being another 4-5 inch incision clear across his stomach with higher risks of infection and another case of hoping he doesn’t pop the stiches open.
I left the room and went upstairs to a wonderful meditation room they have. I called Tom and we both took a few minutes to get on our knees and try to figure out what we should do. In the end, no dramatic answers were sent. But we both felt that we were jumping the gun with this surgery. We don’t know that Samuel absolutely needs the surgery and who goes out and gets invasive surgery just because they think they “might” need it. We decided to wait on both the nissen and the g-tube until we get a better feel of how he handles his feeds. It still leaves the risk of aspiration pneumonia, but the surgery just didn’t feel right.
So that’s it. We’re getting together a list of all the things we need to bring him home and then we’ll work on getting those things there. They will teach me to use the NG feeding tube in his nose for now. We’ll get all the supplies sent to the house that we need and then we’ll be headed home. In a few months, we can revisit the nissen/g-tube question. But for now, I’m so excited to get home I can hardly stand it!
Love,
Teresa, Tom, Samuel & Boys
September 5, 2005
September 5, 2005 | Updates
Last night was another hard night for Samuel. He only slept about 4 hours total and then fell back to sleep around 9 am and slept until 2 pm. I debated whether or not to wake him earlier, but it’s so hard to do when I know he needs the sleep. Once he was up at 2 pm, I didn’t let him get a second of rest in hopes he would sleep tonight. It is now about 10:30 pm and despite his regular tranxene and clonadine, he is calm, but awake. The nurse is bringing his ambien. Let’s hope he’ll sleep.Being a holiday, today was another slow day. I took the kids to a small aquarium place in Salt Lake while Tom stayed with Samuel. The aquarium was pretty cool with sharks, jelly fish, eels and even sting rays you could touch. Tanner was the only one brave enough to actually do that, though. Then they played in the fountains at the gateway and we got ice cream before we came back to the hospital and headed home. First day of school tomorrow for the younger boys. First day of school ever for Ben. It’s hard to miss it. But they know how excited I am for them.
Samuel did spit up some of his feeds late last night and again tonight. It’s sort of like how a baby spits up when he will burb and up come some of the feeds. This is the first time I have actually seen the feeds come up. Before now, it’s just been stomach fluids.
I saw the doctor who will do his G-tube surgery tomorrow and spoke with him about it. He is still of the opinion to not do the nissen and see how Samuel fairs without it. But he is willing to do whatever I and the rehab doctors decide. We are having a difficult time making that decision. We don’t like the idea of the nissen. But we also don’t want to be constantly worrying that Samuel might throw up and aspirate. But we have to make the final decision in the morning because they are doing the surgery then.
I also saw Samuel’s resident doctor at the Gateway and while talking to him learned that his residency ended this past Wednesday so he is no longer at the hospital. I was really sad to hear that since we have relied on him so much the past nearly 7 weeks. In fact, just last night I told the nurse that Dr. Colliver had said we could page him any time, day or night, concerning Samuel because he knows his situation better than any doctor on call. I guess that’s why he didn’t answer the page. Thankfully, the other doctor I really trust is a permanent doctor here! (One funny story about Dr. Ethan Colliver…One day I was showing Samuel his favorite animal picture book and asked him to “Find the monkey on the page.” He turned his head and looked right at Dr. Colliver! I said, “That’s not very nice, Dr. Colliver isn’t a monkey!” Even Dr. Colliver had to let out a chuckle!)
Well, it sounds like Samuel is dozing off. Tomorrow will be a little more hectic with his surgery and all. I am also going to make sure they don’t want to do a chest x-ray before the surgery because Samuel has been very congested since he threw up and possibly aspirated 2 days ago. Apparently, the weekend resident doctor didn’t order one today because if it shows up positive for aspiration pneumonia, they won’t be able to perform the surgery until he’s better. I’m not quite sure what she’s thinking there! Obviously, there’s a reason that you shouldn’t operate on someone with pneumonia. Ignoring the fact he might have it isn’t going to make it go away!
Anyway, we sure appreciate you all and ask you to keep up the prayers and faith. We still turn to the Lord everyday and feel the comfort and peace that his spirit brings. We would NOT be able to do this without him. We have no doubt about that. Every single day is a struggle in one way or another. Mostly because it’s hard to watch what Samuel is going through.
We love you all!
Love,
Tom, Teresa, Samuel & Boys
September 4, 2005
September 4, 2005 | Updates
Samuel has had a bit of a hard time today simply because he has not been sleeping well. He slept last night from 7 pm until midnight and then didn’t fall back to sleep until about 7 am until about 9:30 am. Tom spent a little time with him and then we went to church for about an hour. The rest of the day was full of little cat naps, but nothing too long. He did sleep for about and hour and a half from 7 to 8:30 pm tonight. But then he threw up some stomach fluids, which we can’t tell whether or not he aspirated, and he has been up since. Despite a dose of tranxene, a dose of clonadine and a dose of ambien, he is still awake and it is 11:30 pm.Otherwise, Samuel was fairly happy today. We did spend about 1/2 and hour outside in the warm sun with a bit of a breeze and he seemed to enjoy that. We also read books and rocked in the rocking chair. But nothing too exciting.
He’s still retaining urine. Can’t quite figure out why. And he does throw up stomach fluids about once a day. That’s also a mystery because it’s usually right after a bolus of his feeding formula that he throws up. Tonight, he even threw up the tube that goes down his throat. But each time, there is no sign of the feeds that were just put in his stomach. Instead, it’s just stomach fluids. Strange? I’m not quite sure where he’s hiding those feeds to quickly.
So that’s about all for today. It’s pretty late, so I’m going to have to break my regular routine of waiting for Samuel to fall asleep before leaving. Hopefully, he won’t be up too long. But I’m thinking that I won’t let him sleep much tomorrow either way so that he is really tired when bedtime comes. We’ll see. It all depends on what he can handle.
Keep praying for him. I know this is turning out to be a long endeavor, but we have felt that it would be from the beginning. We’ll get through it, but we’ll need the prayers you’ve been sending to keep up! We love you all!
Love,
Teresa, Tom, Samuel & Boys
September 3, 2005
September 3, 2005 | Updates
I almost forgot to post an update today. Saturdays are pretty quiet around here. Samuel did pretty well today. I’ve decided that putting that dose of tranxene back to its original amount has made a world of difference.Samuel didn’t sleep as well last night. He didn’t fall asleep until about 11 pm and he was back up around 2 am. He then slept from 5 am until 8 am. Not much sleep for a kid who normally likes 12 hours a night. We gave him some clonadine at 10 am and he slept until noon. Then he was up most the rest of the day.
There were no test or pokes or prods today. We did have a big blow out this morning after his breakfast bolus of feeds. But we like to keep the nurses hopping. He also is still retaining urine. But he sat on my lap for about 1/2 an hour today looking at pictures of him and the family on the computer. He sat pretty still even though he was still posturing some. But I was able to get his hips bent which made it much easier to keep him on my lap.
We also spent some of the day bathing, reading books and playing with his crib mobile. By about 7 pm he was tired and fell asleep on his own because his 4:30 clonadine had definitely worn off by then. I left with Tom and the boys to go get dinner. After dinner, we happened to drive past the Real soccer game going on and just couldn’t resist going since we knew Samuel was snoozing away at the hospital and wouldn’t miss us. So we went! It was great fun as soccer is our favorite family sport. And I’m not sure when we’ll get the chance to do something like that again. (Real lost 1 to 0, but it still was great being there.)
Tomorrow should be slow again. The EEG results did come back FINALLY and Samuel doesn’t show any seizure activity. Good! But I sure don’t know what those little “episodes” he’s having are. I’ve named them “doohickies” for much lack of a better word. (I know, I’m loosing it!) But it is good news that they aren’t seizures. I also talked with Dr. Murphy about raising his dose of baclefin. I don’t really know what to do. But I just don’t feel we’re at a point where Samuel can enjoy life yet. I want to do something more, but I’m not sure what our options are.
Anyway, his feeds are still doing fine. He did throw up today, but it was just stomach fluids. There is a possibility he could have aspirated some of it, but I don’t think he did because he seems to be protecting his airway pretty well. He just sounded a little congested for a while afterwards. But that could just be that he loosened a lot of stuff in his nose and throat when he threw up.
He is still sound asleep as of now - 10 pm. Hopefully, he will sleep through the night. We are fasting for him tomorrow and hope you will all keep him in your prayers. We sure love him and miss him more and more each day. It’s hard to go places and not think of how much Samuel would enjoy being there. That’s all I hope for is that he can get well enough to enjoy life and enjoy us. Pray for his posturing to stop. Pray hard!!! And have lots and lots of faith!!!
Love,
Teresa, Tom, Samuel & Boys
