Mr.B was seen by the Opthamologist today to peer into his little eyes. He has what is called a Coloboma in his left eye, essentially it looks as though his pupil 'bleeds' into his iris. Odd? Yes. Damaging to his sight? Nope, she says not. She said that he would have been born with it, it is something that happens in utero that the iris doesn't fully form (am beginning to wonder what it was I ate during this pregnancy??). It generally comes with retina detachments but his is looking okay. The great new is that it is NOT a result of the strokes, phew! We'll chalk it up to another of Braeden's little 'quirks'.
So the big debate of where Braeden is to reside for the next few months seems to be ongoing. A Dr from the PICU came in and introduced himself yesterday and told me B would be moved to PICU that afternoon. Wha?? Okay... He chatted with me for a bit and I think he came to realize how complex Braeden's issues can be which is good. I had to explain to him my main concern that when B is upset he can't be heard and the nurse may not know until he is blue in the face (literally) that he needs help. Unit 2 was taken off the table, which makes me very happy. I want him to go to Unit 2 right before we are ready to go home, not when he is still unstable and critical without proper oxygen monitoring. He took me for a quick tour and found the charge nurse who promptly told him they had a problem. He interrupted her and let her know who I am and she proceeded to wonder out loud why NICU couldn't/wouldn't keep him if he needs this much care....ok. The Dr excused them and told me the transfer wouldn't happen today (yesterday). Back I go to B's room to find the Neonate there and wondering what is happening. I explained to him what I was told and he went off to find the Dr himself to discuss it. Then Dr.Boulton (his Neonate from last two weeks) came in and I explained the situation to her and SHE went off to find them. What it comes down to is not where it is best for Braeden per se but politics. The NICU is the best fit for a baby like Braeden but he is not sick enough (yay?) too warrant keeping him because of his age and he is a bit too sick for PICU to staff for him....again I say wha??? So for now he is staying put, but with the knowledge that he can be moved at any time to the PICU. Okay. Can I just say to them, "You are all just stressing me out!!!!"??
We got an extra adventure at ACH yesterday with Mr.Ry in the emerg department. He was fine when he woke yesterday and then when I asked him to go get dressed he did but then came into the kitchen in visible pain. His neck was totally locked and he couldn't move it at all to the right. Wha?? I was under the understanding that kids were made of elastic! He has a 'Acquired Torticollis', basically meaning he has a kink in his neck where the ligaments are trapped in between his vertebrae. OUCH! Poor kiddo!! So I got to have an extra long day at the hospital yesterday is all. Ry is feeling a bit better today but had to miss school again (to his chagrin). I am hoping he'll have enough movement in his neck to go to school tomorrow, goodness knows he (and by he I mean me) needs it!
I had a good day with Squeak today, we had a whole 'squeaky' conversation this afternoon. I felt like I got to do some 'Mom-ish' things with him today which is always kinda nice. You can all laugh when I tell you how nice it is to be alone with him and change his poopy diaper and settle him into sleep. It's not much and it might stink (figuratively) but it's all I've got!
We (the main nurses and I) have come to the conclusion that Braeden is stable when he is attended to by someone who knows him and his quirks. He gets very unstable and critical when the attending doesn't know enough of his signs to try to help him BEFORE he is in distress. What does this mean? Not much considering they are going to be moving him to the PICU sometime soon. Guess what it means is that I should be writing a "Braeden Handbook" for any of his new nurses. I'll start that one in my spare time...