UPDATE - Thursday

Overall I think Colby is doing well. He still does not have a fever, that's a plus. They've started him on his feeds, that's a plus. He was on 2 antibiotics, now he's on 1, that's a plus. He was seen today by PT to do some stretches and range of motion exercises, that's a plus. I usually do PT at home but with all the leads, tubes and such stuck in Colby I'm a little nervous doing it right now. He had a higher heart rate for about 1.5 hours today, but it was nothing a little morphine couldn't handle. I think he's definitely still in pain/discomfort.

The process for weaning an SMA kid off a vent is slow and steady. The goal is get down to Colby's home bi-pap pressure settings then try to extubate him from the vent. From there he will go to wearing his bi-pap 24/7. The plan after that is to start taking windows, usually 20 to 30 minutes at a time, until Colby gets back to his normal home routine. His home settings are 21/7. He started out on the vent at 24/7. He is now at 23/7 and at rounds this morning, the docs and I agreed to take him down to 23/7. This hasn't been done yet but I'm going to check on it as soon as I get back to his room. So everything at the moment is moving in a forward direction and that makes Mama very happy. We'll be here a while, like I said you have to be very cautious with an SMA child and not rush into extubation. We learned that the hard way, but we know better now!

Colby has gotten balloons, books, get well e-cards and I know everyone is praying for his recovery. I also know you're praying for my family and me and IT IS MOST APPRECIATED. THANK YOU VERY MUCH. Just keep hoping that's Colby's progress moves in the forward direction, no setbacks allowed! My brother and sister-in-law are taking good care of my parents. They live about 40 minutes away so Mom and Dad trade staying with Colby and me, then going over there to eat, sleep, shower, etc. Anne sent me some ham and biscuits and a piece of pineapple upside down cake. Sure beats the soggy french fries I ate in the cafeteria last night. Bye for now. More when I can.