Never a dull moment

How's that for cuteness for the day.  The respiratory therapist (and I) feel like this is the best position for him.  And he loves this little swing.  He has access to many toys right around him.

He had a pretty rough night with his oxygen levels dropping quite a bit, quite often.  But I've discovered if I wake him up, they go right back up.  So ... they were going down a lot so he and I were awake ... a lot. 

This morning, they came in pretty early so he was still tired.  They took him off his feeds at 4am because he was going to have a sedated MRI of the brain.  10 am they took him back and gave him chloral hydrate which knocks you out pretty fast.  But between him being overly tired and quite hypotonic, he was out in less than a minute.  But his oxygen was immediately very low so they put him on oxygen through the whole procedure and until we were back in the room. 

Since then, he's been having a very hard time keeping his oxygen levels up and it's very hard for me to rouse him enough to get them up.  They may need to do a boost of oxygen until this drug wears off. 

He was quite, quite grumpy and very sleepy.  In fact, it's 1:30 as I write this section and he's still asleep.  BUT ... there's a new thing that just happened.  At noon, the nurse checked his arm where the IV is and all was fine.  By 1:15 his arm is soooo swollen, fingers are purple and he can't even begin to move it.  His arm is as hard as a rock.  They say it will take 1-2 days to go down. 

I'm waiting for the IV team to come in and get a new one started.  He was very difficult the first time to get this vein and they had to be called in so now they're calling them back in again. 

In the meantime, we saw the 2 specialists we've been waiting for.  Neurologist says SMA is possible but he thinks it's not because his muscle mass is normal and it doesn't look like he has any atrophy ... which would have started.  Plus, he doesn't have any tongue fasciculations (a weird way of moving the tongue).  So yippee!  He thinks no.  He's anxious to find out the results of the MRI in the morning.  And then we go from there.  He's also ordered an EEG for tomorrow morning. 

The pulmologist also came in and he is changing up his meds a bit and instructions for the respiratory team.  He's also going to work on getting me some equipment at home.  He's ordered a sleep study since he's having the low oxygen every night. 

I'm feeling very very optimistic that the team is now on the case.  People, who are experts at their jobs, are putting their efforts into finding out what is going on with my little man and how to help him!