Tuesday, November 27, 2012
Day 1 of the ketogenic diet...very stressful. They told me to be here at 9:30 or 10:00 to be admitted and if a room wasn't ready, they would send us to day medicine. When I went to admitting they said I was an hour early and didn't need to be here til 11:00. So we went to day med. They called and said they had a room..so the elevator stopped at the 2nd floor and when i went to get off the day nurse med said we are going to 3C. I told her we can only go to 2A since Hannah has a trach so when we got there, they called 2A and they weren't expecting us...so we came to the floor and had to wait for them to move 3 kids around to make room for us (she is MRSA positive) Finally we got a room, they laughed and said we got upgraded! We are in a private corner room, the only room with it's own bathroom. We were in this room 2 years ago and were here for a month. She had spinal fusion 2 years ago yesterday and while in surgery, she went into kidney failure and had to have dialysis!
She just got her first feeding of ketocal...a ratio of 3 to 1. they will watch her ketones and will slowly increase the feeding til it's full strength. She has to be at her regular feeding schedule and have normal labs to go home.
The IV team came in and almost gave up on giving her an IV, they were shocked at how much her veins rolled and how she could wiggle her arms and make them roll more. so we are protecting that IV. I think I need to approach having a port put in again. the ketogenic diet is going to have us doing more labs than usual.
They were full at the ronald mcd house and didn't have a room for me but the social worker called today and they had some check outs so they finally had a room for me, thankfully.
I will update more as things change.