Archive for September, 2005
September 2, 2005
September 2, 2005 | Updates
I am sitting here waiting for Samuel to fall asleep. It is nearly 11 pm. He followed his usual pattern last night. He slept from about 9:30 pm until about 3:30 am. Then he was up until 5 am, but slept from then until about 9:30 am. I’m not quite sure what that 2 or 3 hours awake every night is all about, but it would be nice if we could get him to sleep through it.I sponge bathed Samuel this morning and I have found lately that he really loves to have his hands rubbed. I try to take time once a day to rub down as much of him as I can reach with all the casts and spints and monitors on him. Physical therapy came to get him at 2 pm today which was earlier than usual. So he didn’t get to take his regular nap. They casted his right arm again and this time he didn’t seem to mind it much. Then they gave him a good work out.
About 5 pm Samuel’s heart rate started hanging out around 180 and he was more upset than he had been all day. So I had them give him a dose of clondine because he hadn’t had one dose all day. Within 30 minutes, he was out cold. I got to go to Tanner’s soccer game here in Salt Lake from 5:30 until about 7:30 pm. It was nice to see him play again and when I got back, Samuel was still sound asleep.
The orthopedist also came today and made a back brace for Samuel. It’s supposed to help keep his back from arching so badly. We only put it on for a few minutes, though, because they came during the time period when Samuel’s heartrate was already up. So we will maybe try it tomorrow and see if it helps things at all. He’s got about as many braces as he can possibly have - one for his back, one for each foot and calf, one for each arm, and now we even have spints for his thumbs. He has been really digging into his fingers on his left hand because he clenches it so tight. The thumb is a mess, the pointer finger has a black nail from it, and the other three fingers have scabs on them from rubbing against something or other. So I have actually wrapped the whole hand in a washcloth and coflexed it on there for the night. Bandaids just won’t stay on because his hands are too sweaty.
He is tolerating his feeds fine even though they have increased the bolus doses today. And the daily supositories seem to be doing the trick. He is still retaining urine at times though. The change to the pump doesn’t seem to be helping that. But I think it’s because he is just never relaxed long enough to go unless he is asleep. They have a hard time cathetering him because he is so tight. I can imagine that is making it hard for him to go.
Well, enough of that stuff and onto the good stuff. Samuel was so aware today. He is getting better and better at focusing on things. He loves the mobile on his crib. And he loves to read books just like he always has. Now that the cast is on his right arm, he mostly swings it around all the time. He gets himself in the head quite a bit. But today I would hold a book in front of him and ask him to get it. He would get a frustrated/concentrating look on his face and it really seemed he was trying. He would keep that up until that right arm moved. Now mind you, whatever way it moved, it would probably hit the book. But when it did, I would put his hand around the book and he would relax and let me read it to him.
He’s still the same little boy who likes the pages turned fast. If I went too slow, he would get upset. And he is definitely focusing on the pictures. That’s the kind of stuff I love to see.
That late nap must have made it hard for him to go to sleep tonight because the tranxene at 8 and the clonadine at 9 didn’t do the trick. However within about 3 minutes of pushing the ambien into his stomach at nearly 11 pm, he was out cold. I’m absolutely certain that ambien didn’t get digested and into his bloodstream within those 3 minutes so that dose was unnecessary. But that’s usually how it goes!
Love,
Tom, Teresa, Samuel & Boys
September 1, 2005
September 1, 2005 | Updates
Samuel had an OK morning today and a better afternoon. I got here this morning by 8 am and by about 9 am Samuel was sound asleep. He slept until about 11 am even though he hadn’t been given any medication since 4 am. But I guess he didn’t sleep all that well last night. He fell asleep about 10 pm and then woke at about 3 am and really didn’t go back to sleep until after I got here. That seems to be his schedule lately. But I did find out today that the resident accidentally changed his baclefin pump two days ago so that he wasn’t getting a larger dose at night like he was supposed to. Maybe that’s why he hasn’t been sleeping as well.I got pretty frustrated by about 1 pm because Samuel just wasn’t very happy. It just seemed like it was about to be a repeat of the last 2 days. So I went to physical therapy and asked them if I could remove the cast on his right arm and see if that helped his agitation. They said I could and I had that baby off within about 2 minutes. But it didn’t seem to help. Then I talked to Dr. Such-Niebar and asked her if she thought the difference could be that he had his tranxene dose cut in half two days ago. She said that it could be the problem, so she wrote that the other half dose of tranxene he’s been missing can be given if we thing he needs it. Well, I was tired of Mr. Mad here, so he got the extra dose with his regular dose at noon and then again at 8 pm. He was much, much happier the rest of the day. It was great!
They started bolus feedings this morning. He gets 100 mL over an hours time four different times a day and then continuous feeds at night. They will keep increasing the bolus feedings until he doesn’t need the night ones. He has handled them fine. He did throw up a little today, but it was all bile which is strange because it was right after a feeding. He must be digesting things pretty quickly.
He is still having problems with urinary retention, so they changed his pump once again to give him a small dose continually with bolus doses every 4 hours. This is supposed to help with the urinary retention, but we will see.
They also came today and made a cast of his torso. They casted from below his arms to the top of his hips. They just left it on for a few minutes and then took it off as a guide to make him a soft one that can come on and off. They are hoping it will keep him from arching so badly and possibly getting scholiosis. We also noticed in therapy today that he is really messing up his left shoulder. He hangs his left arm back behind him and now the wing on that shoulder no longer works correctly. I don’t know the science behind it, but I do know that they couldn’t get much rotation out of it at all. Not good, but not much they can do about it.
Samuel was pretty happy during physical therapy, which was nice. Pretty happy means he wasn’t screaming the whole time. But I played with him later with a mobile that they got for his crib. I would take his arm and have him push the buttons that made it light up or touch the objects on the mobile. He really seemed to enjoy it. And his eyes were really following things. I decided today that he does track things pretty well. I turned off the light and had him track a flashlight and he did. It was nice to have him awake and somewhat happy for a little while.
And…he took a REAL bath today!!! He wasn’t too happy about it because he doesn’t like to lay down in the bathtub and he was much to slippery and wiggly to let him sit up. But I was thrilled because I got to actually wash him off. It was great!
He’s sleeping now, so I’m headed out. Hopefully, he will sleep well. Keep him in your prayers. They have rescheduled his g-tube surgery for next Tuesday. Hopefully we’ll have enough information to know if he needs the nissen or not by then.
We love you all!
Love,
Teresa, Tom, Samuel & Boys
