The last few days have been pretty laid back. With the holiday weekend and many doctors being off, we haven't had many disturbances and it has been nice to just get to hold him and hang out! Tomorrow things will start up again, so I'm hoping we wont have an insanely stressful week. I know he will start therapies this week and also have an eye exam. Other wise the plan is to try to wean him down on his vent settings and wait until he gets this fluid off his lung and do a trial extubation. This will be hard because it has to be done in the ER and all the right people need to be there because of him being hard to intubate so we aren't sure how this will work exactly. It still seems that we will really only get to go home with him having the trach. It will just be safer and probably easier or what will give him the best chances, but we are hoping for a miracle still.
His, and luas, condition is still a very big unknown that they are trying to figure out, but no tests have been started yet. I wonder if they will figure it out. The thought is it still might be x-linked sma since they fit some of the characteristics but it usually doesn't effect girls so doesn't explain why lua got it. Could potentially be a myopathy but nothing for sure.
I do absolutely love our pulmonary doctor, she is but the best and has been amazing to us. She suggested to the nurses that they find ways to sooth him besides giving him medication and last night our night nurse found a vibrating toy, stuck it under his butt and he loved it... So first 24 hours he has gone in days with no medicine being administered. Turns out he is just acting like a baby that needs some more comfort measures than anything else. It is so nice to have a doctor that is a specialist in this field of neuromuscular diseases, and the fact that she will give us the tools we need this time instead of us fighting to get anything for lua, which hopefully can give us more time and maybe hopefully more improvement out of Sol. We will see, but I for sure dont regret coming to Madison at all so far! I do regret going to the WalMart here though... I'm sure actual crimes have happened in that store before!
Mr. Sol has a much better suck than lua had, not sure if it is good enough but better than hers... It was pretty cute.. This evening he was awake for some time, but he started to get ever so heavy eyed... I have him a nuk and he just went to town and his eyes started to get heavier and heavier but then he would start sucking on that nuk and wake back up... So unfortunately I had to take the nuk from him and in like 3 seconds he was out cold! Resting very peacefully... Reminds me of something normal babies do and those are good moments to have every now and then!
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