September 9, 2005
September 9, 2005 | Updates
I have been worried that these updates are too long, but at the same time, I want to keep of good record of the care Samuel is receiving. It’s already been helpful to have it several different times. Someone suggested that I write a summary of the day and then a details section below. That way, you can all read just the summary if you’re in a hurry. So here goes…SUMMARY: Samuel had a pretty good day today. He slept fairly well last night (which means 6 hours straight and a few hours this morning). And he spent quite a bit of the day in his wheelchair. He tolerated his feeds fine all day - no throwing up. And he was more aware and alert and tracking with his eyes than I’ve seen. We are still working on getting his posturing to stop, and he is still having tightness in some of his joints. We are mostly worried about his left shoulder, his right hip, and his neck since he chooses to keep it turned to the right at all times. We are looking at going home the first part of next week.
DETAILS: Samuel didn’t fall asleep until late, but he slept until 6:30 am. His morning nurse got a little carried away and gave him clonadine at 7:30 am, tranxene at 8 am and more clonadine at 10:30 am because he was “arching a little.” By the time I got here at 11:00 am (had to get some shopping and wash done first), he was out cold. I was a little frustrated because I don’t like to see him that drugged. It will be nice to get home so we can control things like that.
Samuel spent probably 4 hours in his chair today. Two in the early afternoon and 2 later tonight. He really seems to enjoy being in the chair and I take him with me to lunch and dinner if he is awake and feeling well. He doesn’t seem to mind all the noise and stimulation in the hallways and cafeteria. I think they are good for him.
Physical therapy went well. They are going to try and do a swallow study on him Monday to see if he will swallow correctly so we know whether we can try some food and liquids with him when he gets home. His feeds went well all day. He still has the catheter in him and we’re hoping after this break, he will start urinating on his own again.
We raised his pump a little again today. They wanted to do a 10% raise, but I asked them to just go 5% at a time. That raised him to just over 1400 per day. He seemed much, much calmer all day since we changed him to the continuous infusion and he is sleeping better with the higher doses at night. He is still getting the tranxene every 6 hours, but I think we can start backing off on the clonadine quite a bit. I also asked them if we could back off on the keppra since I don’t know that it’s doing him any good and it can really make you groggy. They suggested we try that when we get him home, so we will. He is basically only taking tranxene, clonadine, keppra & the baclefin in his pump along with some medications for reflux and some stool softeners. I want to get him off as much as we can and let his little body work on its own as much as possible.
They should take the cast off his right arm tomorrow and build a spint for it. They also ordered for his back brace to be worn 18 hours a day. I veto’d that order and told them we could try it a few hours a day, but just going from nothing to 18 hours a day is really going to make him upset and cause sores on his body. So we’ll try it for a while tomorrow. Everytime I’ve put it on so far, it hasn’t seemed to help the arching much and it’s really made him mad. We’ll see.
I met with the discharge nurse today and we’re working on getting everything we need to go home the first of next week. We don’t know when or if we’ll even be able to get the night nursing care. But at this point, we’ll go home without it if we have to.
Pray hard that he’ll keep feeling better and mostly that his posturing will subside. Of course, only if it’s the Lord’s will.
Love,
Teresa, Tom, Samuel & Boys
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