It has been 10 days since surgery and 10 days of waiting, wondering if Addie's chest is healing, praying and getting mighty sick of being in the ICU. We trust in the wisdom of the doctors who have wanted to give Addie plenty of time to heal before pushing her at all. We've had a couple of times we thought we might be making some progress only for the doctors to say we needed to wait a bit longer. But now today we are moving forward and giving Addie's little chest its big test. If she does awesome we are a huge step closer to home and she just might be spending her one year birthday at home after all! If today does not go well, then I guess we're kinda back to square one. But nobody is talking too much about that. We're hoping that is a conversation we don't have to have. So for tonight we need lots of prayers for Addie that these changes go really well and that we can get our sweet baby girl home and our little family back together under one roof.
We are actually doing three big changes today (hey, when it rains it pours around here I guess!) First of all, Addie is being moved OUT OF THE ICU!!!! She will move to intermediate care 'on the floor' which is exciting. She's been looking way too healthy and happy for the ICU all week so we will be glad to make that the move out to somewhere that just automatically sounds like things are less serious.
Next, we are trying Addie back on her home dialysis machine. Which is awesome because I hate the manual dialysis we have been doing. It makes it impossible to get any sleep up here and as long as she is on it, she's automatically not close to going home. So she'll be back on her machine on a program very close to her home one. She is back to full feeds and extremely happy to not be hungry all the time anymore.
The biggest deal of all though is that we will be clamping or closing Addie's chest tube to see what happens. Addie is draining way less out of her chest tube she is still draining a couple hundred mL while on dialysis a night. The surgeon thinks she may continue to as long as the tube is open. So we will try closing it and one of two things will happen. Hopefully (and PLEASE pray for this outcome), the fluid will stay in her abdomen and not accumulate in her chest and her midnight chest X ray tonight will be good. We will watch it over a couple of days and if fluid does not accumulate around her lung, she has proven she no longer needs the chest tube. We can then pull it and hope to get her home in a week or so. If fluid does still move into her chest (either because the procedure did not work or because it just hasn't been enough time), it will accumulate due to the tube being closed and her chest X ray will look cloudy. We will have to open the chest tube back up and start to look at what next.
So please please pray for Addie starting around 6pm tonight that she can handle the chest tube being closed, that she is successful on her machine and can stay out of the ICU! We are praying she will be home in a week and that we won't be back here until transplant time. We would greatly appreciate your prayers, positive thoughts and love as Addie prepares for this big day!
Today at the hospital Addie had her daddy and her best friend Max come visit to wish her luck for her big night!
From 2 days before Addie was admitted to hospital, with their Uncle Adam in their matching Christmas outfits
My sweet babies- praying they'll be back home together again soon.
1 comment:
Stephanie you are such a wonderful, amazing, graceful, faithful, loving mama and wife and woman. I have been following your journey for the last few weeks and I cannot tell you what an inspiration you are to me. Your faith in God is so obvious because of your positive, hopeful attitude. I know this last year has been crazy, and the last ten days have been so hard. But you have endured so well, sweet girl. Thank you for your updates. You are such an encouragement.
Praying right now for Addie.
By the way, I used to work on CSC. I know your docs and your nurses. Hoping you're having a good experience there at The Herm! :)
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