Day 1 and 2

   Well here we are in room 4004. We haven't had this room yet. We came in Friday morning at 6 am for Kylie's fondo. We were in pre-op waiting for the doctor when the anesthesiologist came to check on Ky and concluded she was too sick to go forth with surgery and postponed it. Her surgeon came in and admitted her to a room and started an IV. They wanted to test her for a bacterial infection that attacks the intestines and moves throughout her body and causes her to have diarrhea and eventually severe dehydration. My frustration with all this was that I had called her "team" of doctors and she not only went in for two appts. I talked to them five times in a week and a half and said she was severely dehydrated and not taking feeds and throwing up as well as diarrhea and severe fussiness (which is not like Ky at all). She lost a pound and a half over 9 days and for most of the week she only got pedialyte because she would throw up her formula. They kept telling me to just continue pushing pedialyte and keep her hydrated. Needless to say none of that worked and she was finally tested and found to have the bacterial infection (called CDIF) that started attacking when she was given antibiotics for an infection of her G tube. Her blood work showed very low levels and she needed hydrating which as of this morning we have accomplished and they are the low range of normal. The new antibiotics are treating her now and we are hoping to try and get surgery done tomorrow afternoon. The challenge is that they have to give her the antibiotics for her surgery that caused her to get sick in the first place so she is in a vicious circle. She has perked up quite a bit today and you can tell she is trying to feel better. We are hoping to try  a feed with formula here in about an hour without throwing up. The last 48 hours haven't been what we expected as we were supposed to be recovering from surgery right now and there are still a lot of undecideds about the next step. We are just so happy she is finally getting the care she needs and making progress towards getting healthy. The doctors will meet in the morning and come up with a plan of attack. We have been shown so much love, support, and generosity from our friends, family, and nurses. Day 1 & 2 down..........more updates to come.