Long Day, Unit 1 Move & Big Day Tomorrow.

Well, it's about 10pm and after a quick first coffee at 12pm today and a chance to grab a hard boiled egg for a snack (breakfast, lunch and supper... thank God for that egg) I just had a chance to eat a meal. Same with Lyle, he's been work'n his butt off today and Bella's been a trooper through today as well. 

Medical Update

Today Bella had her monthly IVIG transfusion (blood product). This gives her an antibody boost. So she's hooked up to so many wires and lines for 3 hours I can barely change her diaper. And because it's giving her someone else's blood product, nurses had to check her vitals every 15min.

She also had her 3rd RSV shot to help protect her from serious respiratory illnesses. She also had to deal with a bandage dressing change this morning that took too long. (Covers her iv line in her chest) She has to be held down for this and is really upsetting for her. She's so smart, she gets upset when she sees the nurse gets all the supplies ready. It's not supposed to take more than a couple minutes because if it does, Bella almost has panic attacks and gets really worked up and is then really hard to calm down. Im praying these bandages last longer than 3 days at a time, I don't want her to go through this every time the bandage covering her line needs a change, for the next however many months. :(

Meds:

Erythromicine: She's done with this one! 2 days so far and she's poopn great. She has been on this med since July 2014 for motility of her bowels and is now completely off it. She's adjusting well, a lil pukey after a feed but poop'n great. So her bowels shouldn't need help from this drug anymore! 

Ranitidine: she gets this twice a day to help keep her tummy happy. And it also helps reduce acid in her tummy. 

Septra and Fluconisol: These are antibiotics given as a profolactic Med right now. They faught the infection in her lungs and esophagus and now are at a preventative dose to keep Bella at her best before BMT.

Prendisone: this is a large spectrum immune supresent med/ steroid. Helping control Bella's immune system. Even tho it's not much of an immune system it's not doing what it's supposed so it's causing problems like her harsh skin flare ups. 

Sycosporn: more direct immune supresent med to help Bella be at her absolute best before BMT. Bella will just be starting this med tomorw. 

UNIT 1 !

Part of today being so long is because we moved units today. We are officially in the oncology unit now and Bella has a new room. So we said "Good-Bye" to unit 2 today. We'll miss all of our nurses that knew Bella the best. But we've heard so many wonderful things about the very specialized nurses and team of Unit 1 and we are looking forward to getting to know them, and for them to know our Bella. 

Tomorrow: 

We have our much anticipated, big meeting with the BMT team at 10am. They generally don't have these meetings with the family until they have, or are very close to having, a match! So we are anticipating big news tomrw, but who knows. Hoping and praying!