Quiet Day

Today was not as hard as Wednesday, but was definitely not as good as yesterday. Alistair has been sad a lot today, like tears and crying. The other day seemed more like frustration where as today just seemed sad. But he also has developed muscle soreness in his neck as you can see him holding it to the right side. Part of that is ongoing, part of that is from more use. Yesterday he demonstrated quite a bit of head control and I am sure his neck muscles are sore! You can feel the tightness in his shoulders. So I think this was causing him quite a bit of discomfort and the only way to express it was to cry.

We did not get into the rehab unit today. The insurance company, who have been great to work with thus far, were the ones to drop the ball. Apparently they felt that his case needed an additional physician to review the paperwork. It's total B.S. if you ask me because anyone with half a brain can see, whether in person or on paper, that this kid NEEDS to be in rehab. The care teams here are all on the same page and were even talking about just moving him to a rehab room in anticipation of his impending approval just to free up a surgery unit room. But all those talks stalled this afternoon and we are in our same room still. There is a chance he could move tomorrow, but I am not going to hold my breath. At this point it is just frustrations over caring for him. The nurses on this floor have been great and really, really try to accommodate caring for him in a rehab kind of way with our help, but they aren't trained to do this. Alistair needs to be encouraged to do stuff and if it is too hard or cumbersome, he might not keep it up. Hopefully we don't have to wait too much longer. But it is also maddening that we got Alistair here with the process started before we left and we will have spent a week sitting in an acute care room waiting. 

I had a good cry today. It helped. I really haven't allowed myself to really breakdown yet, mostly because I am with Alistair and don't want to appear unsupportive or give him cause for concern. But after having cried, dealing with everything this afternoon was a bit more easy. This is all unfair and I want to run around asking "why?" But it doesn't help anything or anyone, I won't get an answer and I don't know that I would want one if there was one. I like to pass the time looking at social media so I feel like I am at least keeping up in the world I am not currently a part of. It is nice to be in the loop on stuff, but at the same time it makes me mad, jealous and sad that we aren't doing the things everyone else is doing. Of course our summer would have been a bit more low-key with Alistair recovering from heart surgery, but we would have still done stuff. I ran out to get some lunch for Seth and I, away from the hospital, and I just felt sick coming back knowing this is our reality for a while. 

I have been talking to Alistair about having visitors. I think for the most part he is fine with family or our friends (adults), but he told me no to having his friends come. I think this will change in time, but right now we think he is afraid his friends won't accept him. We know that isn't true, but I think until he has made more progress and is feeling better about himself, he may not want to see his friends. So stayed tuned and be patient! He just needs time, which seems to be a theme.