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
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