Happy August!

So we're two weeks post op and Kennedy is doing really well! We've postponed her G-Tube surgery until next Thursday. They're trying to see if she'll need a Nissen fundoplication as well as her G-Tube. Kennedy has had reflux issues in the past. When she arrived at CHOP they adjusted her feeding tube to feed her directly into her small intestine instead of directly into her belly. That helps with the reflux and since she's been there she hasn't had any issues. Now that her G-Tube surgery is coming up they want to see if she still has reflux and if so the severity of it. After her first trach change they moved her feeding tube up to feed her directly into her belly and she handled that pretty well. Then they switched her from continuous feeds to 2 hours on, 1 hour off. She handled that good as well. While all of this was going on they also took her off her morphine and weened her sedation drastically causing her to have withdrawal symptoms. So when they made her feed switch Tuesday to 1 hour on, 2 hours off she vomited after every feeding so they moved her back to 2 hours on, 1 hour off. That was her happy place. The doctors said they can't be sure whether the vomiting is definitely reflux or because of her going through withdrawal. She's having all the other symptoms (shakes, loose stools, restlessness). The doctor said we had two options, we could postpone the surgery by a week and let the medications completely come out of her system and see how she does with her feeds or he said if we wanted they would do the surgery with the G-Tube and the Nissen being that she does have a history of reflux. Doing the Nissen would help with her reflux and basically prevent her from throwing up. However, it's a permanent fix. It isn't something that they go in and "undo." They do say when the surgery is done on kids at such a small age the band does unwrap itself as they grow but it's not guaranteed. Doing a permanent procedure on her that we aren't sure she needs just doesn't make sense so we decided to wait until next week. I'm actually alot happier about that because she's been through alot this week and I'd like her to have the next week to just relax.
 
So that's the plan, she had a "day off" yesterday and they're planning on trying to switch her to 1 hour on, 2 hours off again today or tomorrow. In the meantime she's been doing really well! Her blood gases have been great so they've been chipping away at her vent settings. Hopefully they can chip away a little more during the week. Her oxygen has been awesome as well! She's been breathing 21% (that's room air, what we breath) since the weekend with no adjusting needed. And since they've weened her off her sedation she's had much more awake time and the nurses will be able to start to do a lot more with her.

Arthur & I went to take our first trach class Tuesday night. They taught us how to clean her stoma and the area around it and they also taught us how to change her "strings" which is the little collar around her neck that supports the trach. It was a little overwhelming. Easy to do on the doll but I'm sure when we do it for the first time on Kennedy it'll be much different! I do my first actual change on her tomorrow. They'll also start to allow us to suction when she needs it. And I was able to get her out of her crib on Wednesday all by myself. Sounds strange, but it was awesome to be able to pick my daughter up out of her crib with no help from nurses or respiratory therapists. The idea is to get to the point where if Kennedy needs something or it's time for her care Arthur & I will do it and the nurses will just watch us. That's when we'll know we're ready for her to come home.

Kennedy coming home...it feels closer to me at this point than it ever has. She'll be transferred to Children's Specialized hospital probably within the next two weeks. It's obviously been put off because of the G-Tube surgery being put off. But once she gets there it'll only be for a few weeks and then she'll be home. Finally I can see a light at the end of the tunnel and it feels awesome!!!

I've posted some new pictures of Kennedy below. She's getting so big and these longer awake times are making for some really cute pictures!

Before I go I wanted to share something with you all. My friends Alli (Kennedy's Godmother) and Jill were looking for a way to help us out with the expenses we'll have when Kennedy gets home so they set up a gofundme website for her. The progress this site has made in just 7 days has Arthur and I just stunned, amazed and tremendously grateful! I've found myself saying this a lot lately but there are amazing people in this world. People, some we may have never met, who have supported us, donated to and prayed for our beautiful little girl who has been fighting since the day she was born and yet she manages to look up at me with those beautiful big brown eyes and smile. You all have brought me to tears. I will make sure each and every one of you have the opportunity to meet this wonderful little girl that you continue to think about and pray for! I promise you it'll be worth the wait. She's nothing short of amazing!

http://www.gofundme.com/c1oa8s

Thank you all again! You have given us so much more than I can ever express!

Love to you all,

The Crist Family
Arthur, Katie, Makenzie & Kennedy