Yesterday we moved from the ICU to the Endocrinology floor. It was a big day for scarlett. She had more meds moved off her central line and transitioned to oral versions. The Ultra sound showed her hepatic portal vein where the islet cells were infused looks normal. Additional tubes were removed from her abdomen and she had a big day with PT and was able to walk down the PICU hall.
This floor is much quieter. Kelly and I got 6 hours of sleep last night which is double the last 8 nights.
We started our diabetic education and have gotten 10 hours in so far. Blessings to anyone who has had to figure all this out! I’m just thankful for the technology of the 21st century minimizing a large amount of human error.
They keep praising Scarlett on her progress and telling her how well she is doing. We have no basis of comparison, we recognize every little baby step! It’s hard to imagine what it looks like for those kiddos and families that don’t do well.
They figured out the right combo for her pain and it has been better controlled over the last 36 hours.She walked 250 ft today during PT and they were super excited for her.
Today we experienced her first big low blood glucose and wow, that a roller coaster. The symptoms of confusion, weakness, irritability and so on are all super sized. I’m glad we were here with the support we needed to really see how to manage it. It wiped her out but she rebounded after a good nap and consistent sugars.
They have given her clearance to eat. She will be managing a lot of different things with her diet but right now a few bites of anything is important to try and wake the gut. The better she can do with this quicker she can potentially ween from the feeding tube. That is the slowest part of her healing.
She has had a lot of down moments but so much of it is due to the large amount of pain meds and other things that alter her personality. I’m ready to see her personality again.
I will be traveling home soon to relieve my in laws. Kelly and I will then rotate back and forth. I’m extremely nervous to leave her but feel like i have lost limbs being away from Shep & Ansley.
Continued prayers for progress, pain relief, healing, physical strength, mental strength and of course for her islet cells to engraft and produce insulin!
????????????????????????????????