Overall Jude had an okay weekend. On Saturday he did have a tone issue where his heart rate got high again. On Sunday the nurse was giving him the scheduled oral Baclofen. We noticed it would keep his tone down, but his O2 levels were not that great. At one point the nurse had to put up to 4 liters on Jude to keep his O2 hovering in the low 90's. However, as usual Jude recovered.
Sunday night he had a horrible tone session! He was very spastic, face was red, temp was about 100, and his heart rate was 200-206. I am sure they got this all on his heart monitor, but they didn't call. So therefore, I am assuming they are not to concerned since we were able to get his tone under control.
I felt so terrible this morning. I went to check on Jude and noticed the smell of his formula. So I turned Jude and sure enough he had thrown up! I don't know when this happened, but Mike nor myself heard anything. It was all in Jude's hair, down his arm, on his pillowcase.....everywhere. I mean the kid didn't miss an inch! I thought I heard something around 3:30 and went to check on him at 3:38 but he was sound asleep. So I am not sure if it was then or when. I felt so sorry for the little guy. He could have aspirated and we didn't hear a thing.
Jude is still happy. He woke up in giggles this morning and when I talk to him he still gets a huge smile. The only thing I have noticed appearance wise is that he is rather pale, he still looks thin, and his eyes look tired. I am sure he is worn out.........I would be. Again the good thing is that Jude is very happy. Next week we will hold his 6th birthday party!