Update

I'll get to the med update on Hudson in a minute, but first, a few pictures.  Hudson's 4th birthday was 2 days after we came home from Florida.  It was such a busy time, and it kind of snuck up on us!  I ran out and got him a cake, not that he can eat it, but everyone should have a cake on their birthday!  Here's the BEFORE picture.

And the AFTER picture.

Yes, I dropped it.  On Aislin!

Awesome.  Aislin and Jake did still eat some of it though, and we lit the candle and sang Happy Birthday to our sweet Huddy.

Aislin and Jake's school did something very cool this week.  For the March chapel offering they collected donations for the UMDF in Team Hudson's name!  On Jake's chapel morning, I got a call from his teacher saying that he wouldn't stop crying, and that he hadn't wanted to hand her his chapel envelope.  I talked to him on the phone to try to calm him down, and said I would pick him up early.  Normally I pick him up at 3:30 when I pick up Aislin, even though his class is over at 11:30, we use that afternoon time for Hudson's therapy and appointments.  When I picked up Jake that day, he told me that he didn't want to give his teacher the envelope because he wanted to give it to Hudson so he could get better, and that he missed him and wanted to go home and see him.  My sweet Jakey, he loves his brother, as does Aislin.  Jakey hasn't really ever asked a lot of the questions about Hudson, that's mainly been Aislin.  It's as if it hit him all of a sudden, and very hard too.  So we decided that for the rest of the school year, I'll pick Jakey up at 11:30, and he can have a little extra Mommy and Hudson time.  This is how we spent that afternoon...playing with bubbles and laughing.  We had such a good time.

So as for the medical update, I had written that Hudson had a hard time in Florida maintaining his oxygen saturation levels.  We and his pulmonologist thought that he was worn out and would return to baseline once we got home.  Well, he didn't, and so we had an appointment with the pulmonologist.  She changed his allergy meds and got a chest xray, and told us to contact his cardiologist in case it has to do with his heart.  His chest xray looked ok, except for tons of air in his stomach and intestines.  This has been a recurring xray finding for him for the past few months, and we don't know why it's happening.  We already have a cardio appointment scheduled in the next week, so I'll just wait for that appt and see what the doctor says then.  About a week and a half after returning home, Hudson's sats did start to improve during the day, but they are still lower than normal during the night, so I don't know if this means the allergy meds are working better or if his body is slowly getting it's energy back.  He has been running a low grade fever almost since we got back.  His motility seems worse, I think.  The number of days between when he has a bm get longer, while his medication dose to keep him going gets bigger and bigger.  The pressure in his stomach has been high, causing his feeding pump to stop working and his button to leak.  The change in temperature to warmer weather is causing a dramatic flare up of his autonomic dysfunction, he can't regulate his temperature and can't be outside long.  All of these things could be related, who knows, we have a long string of doctor appointments coming up where I hope we get to the bottom of some of this.