Alistair and his nurse, Jessica, who is the flight nurse. She was back on stand-by today and in her flight suit! This was our last day with her and we are supered bummed, including her!
We called in this morning and Alistair didn't sleep much last night. He got about 2 hours of solid sleep. So we had another early morning to head in and get working with him. It was very perplexing that he didn't sleep since he had such an active day yesterday. He was awake most of the day yesterday and worked quite a lot, so we thought for sure he would sleep. We got in and he was awake, of course. But he also seemed to have a fixed gaze to the right; in that his eyes were looking severely to the right and didn't seem to be able to look elsewhere. We were trying to get him to track, but it was challenging. However, when rounds started and they were standing outside his room, he looked that way. He also watched people go in and out of his room. So we started to feel better. But they decided to have neurology come in anyway to assess him. They tested a few things, asked him to do a couple of things and then decided the best thing to do was to set him up with a 24-hour continuous EEG. They really want him to have a an MRI, but the rest of his care team still doesn't want him to have it. They have compromised on having him have it on the 20th if there aren't significant changes. But the EEG, as cumbersome it is and limiting in activity it is, will show what we all know, nothing is wrong. He just needs time. We are pissed that they decided to do it just because we had talked about taking him outside today and getting him in a chair and being a bit more active. But part of the 24 hour continuous EEG means he has to be monitored by CCTV A/V, so he has to stay put. But it will rule out stuff and we won't have to guess.
This morning was hard. The eye thing was concerning, but once we saw him move them to look at other stuff, we felt a bit better. Right after lunch his nurse decided to have Alistair sit up and dangle his legs again...which takes about 3 people (2 nurses and 1 of us) as he has just about no strength to do it himself. Right before he was sat up, he had a drink of Vitamin Water that we had via a sponge on a straw (he is too sleepy to drink by syringe or straw). While he was sitting up, he started breathing deeper and sighing with a bit of vocalization. I then realized he was trying to talk and watched his lips move. He told me through his very sighed and quiet tone that he wanted more water. When I repeated it to confirm, he said yes in a heavy sigh. My heart SANG! The PT who was working with him was hesitant because of the position of his head and neck and I told her he asked for it so he should get it. So we repositioned his head and gave him what he ASKED for. Then they got him back into bed and we gave him a bit more. After that I had to leave to go to the airport and told him goodbye. I waved to him and asked if he could wave back at me and HE DID. My heart sang even louder. I spent the morning crying and now I was riding high.
I drove to the airport as reinforcements arrived in the form of my Dad. He needed to be here, and honestly it is nice to have some fresh blood to sit with Alistair and encourage him out. And don't tell my Dad, but it is nice to have him here for someone to be supportive and an additional shoulder to cry on. I also think it is good for Papa to be with his Grandson.
Seth was talking to the PT after she was done with Alistair and asking about long term PT. She said he would most definitely be a candidate for in-patient rehab. Seth asked about her doing it here or if he could go home to Seattle Children's. She said she would see no reason why he couldn't come home to do in-patient rehab there and that it would be a better situation as it would be closer to home and his friends and family could be around to help and encourage him. That is good news...as much as I like Minnesota, I would like to leave it and go home!
I hope that this gets better soon. I want to get definitive information that nothing is wrong and he just needs time (as so many have said). I hate having these negative thoughts and thinking about dark things. I am trying to focus on the small steps he is making as well as all the things everyone is saying about how they have seen this before, in much worse situations, and the kiddos have recovered just fine. Many of the care providers are optimistic about a full recovery and I hope they are right.
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