HOLY COW. It's been a heck of a day.
Eli's day started off with a meeting with his inpatient lead. She has some plans and is also coordinating a meeting with ALL of Eli's doctors.
Pulmonologist ~ Wants to do some basic sleep study type things. Wants more O2 monitoring and wants to figure out why on CPAP Eli seems to do worse, not better. Also wants to get the carseat issues figured out.
GI/Nutrition ~ Going to be working on changing his feeds. Trialing no pedialyte, as they are concerned it's causing alot of the swelling from all the extra sodium.
Endocrine ~ They have quite a few ideas as to what they think is going on but are going to be running over 16 tests tomorrow to try and figure it out for sure. They have also changed his sugars from every 6 hrs to every 2 hrs. The doctor is pretty aggressive and pretty thorough so we will see how it goes.
Eli met with Speech, OT, and speech/audiology. They got all of his therapies immediately regoing so that we don't lose any of the things we've been working towards.
Eli also got his AFO's today. They were able to get us in a few days early since we were already inpatient and they had a cancel today. He wore them for about 1 1/2 hrs. Hoping to get a bit more time with them on tomorrow.
I've left our biggest visit for last. Hematology came by. They have all of his lab results finally in. His genetic chromosomal testing came back abnormal. He has a condition called Factor V Leiden. This causing his body to struggle with controlling when it stops clotting. It increase his chances of having more blood clots, along with his risks of already having a clot and his other issues. We weren't expecting this at all. We all assumed that all of the testing would come back clear.
Eli is exhausted this evening and so are we. There were alot of meetings today and alot of information. Tomorrow we begin testing at 8am and it will apparently go most of the day. I will update when I'm able.