Tuesday November 28, 2023
The Ativan and perhaps additionally the Gabapentin continued to make Brandon a little loopy and more tired than usual through the night. He was getting up regularly to pee. At 8am and 10am he got up and stood bedside to pee with no real problems. But by noon, he was unable to sit up for more than a few seconds without falling over. He could not even sit on the edge of the bed to pee. I took him in the bathroom and set him on the toilet, but he could not sit up straight. It was pretty unsettling,
I called the nurse to talk about it. She asked him some questions to see if he was thinking clearly and he answered appropriately. She checked vitals and everything looked normal. She let the Doctors know as they were still doing rounds and were not far away.
The doctors came back in and talked to me. They checked his motor skills and strength and he seemed to be able to follow instructions and push, pull and squeeze with appropriate strength. But he still had a hard time holding himself upright for more than a few seconds. After some discussion and evaluation, they said it could be side affects from the Methotrexate and that they wanted to see if he improved as he peed more and then see what his levels were when they checked at 11:00 PM.
He continued to sleep all day and well into the evening. He had been sleeping almost all of the time since after they put the ng (feeding) tube the day before. As the afternoon progressed, he did start to regain his strength and be able to stand to pee. But he continued to sleep a lot and still seemed a bit foggy. Finally in the evening, he woke up and was engaging and seemed normal.
He stayed up for a good bit before he wanted to rest again and then he woke up again after a bit until I made him go to sleep at about midnight. They did take a blood sample at 11:00 to send to the lab, but by 2:00 am they Methotrexate levels were still not in his chart. I asked and they checked with the lab. The lab said they were having problems but were trying one more time. Then they said they needed a new sample. So it was 3:00 am before we got the results. It ended up being considerably higher than normal for the 24 hour mark, so that would seem to support their thought that the high methotrexate level could have been the cause for how weak and drowsy he was.
I also made some progress on the website and for the merch store, but there is still a lot to do.