Tuesday, March 22, 2011

Discharge catch up

Tomas was discharged on Thursday. It was a crazy scramble because I had to leave to pick up the girls from their Spring Break day camp, and the hospital staff was trying to make it easy for me so I didn't have to come back and get Tomas. It was just crazy and I still ended up being 10 minutes late for pick up. Almost enough stress to make me want to get them a cell phone. ALMOST.
He has been doing well. Not great and not just ok, somewhere inbetween. Every once in a while he acts like he is in pain, and this afternoon he ran a fever. It broke by late evening, and I hope that is that. Unfortunately it means I had to cancel our swallow study for tomorrow ( I had to call and cancel before closing and that was before the fever broke), so who knows when that will get rescheduled for.
All 3 have a pulmonary appt. on Friday and I am so anxious to go over Tomas and Olivia's plan of care. Both need adjustments, so I'll be glad for that appt.
I got THE phone call from the metabolics clinic and his appt. is on April 21st. I'm thrilled it is not 4 months away! I also heard back from the endocrine clinic on his growth hormone deficiency and they are going to do some growth vector chart plotting or something like that. Not really sure how it is different from regular growth charts, but I guess I'll find out. Turns out the growth hormone he is deficient in is not just for stature (in which he is doing great), but also for muscle development (in which he is not doing great). Very interesting...
Still waiting on the call back from the GI clinic, and Tomas still has blood in his stomach. Such a chronic issue, I'd really like to see it get fixed.
I am beginning the logistical nightmare of The Move but I will have help. The absolute best part is my husband's company pays for the movers to pack the house for us. We've had it done many times and it is awesome. They come in like a swarm of bees and in 2 days have your entire house packed. He seriously told me this time we should pack ourselves. I seriously told him I didn't think so!


  1. We had friends that go to use Movers, and after hearing about it, we are FOR SURE doing that the next time we move. Packing is the pits.

    Glad the fever broke, timing on that stuff is always stellar, right? That's awesome about the metabolic appt being so soon. Glad you are both settled back home. Hopefully you can have a lull in the action for a bit!