7/21/17 - Superhero Strength

Today marks a great day! Evie is officially out of the PICU and on the pediatric floor. We had a scare this week that her biopsy of her small bowel showed possible signs of rejection and needed to be repeated. Yesterday, they repeated the biopsy of her small bowel. This morning the results came back with NO SIGNS OF REJECTION! This was a huge step in the right direction for Evie and her recovery. With all the hurdles lately, finally we got a good step forward instead of two steps back.

Evie had to have high doses of steroids for 3 days after the biopsy on Monday showed possible signs of rejection. These high doses of steroids cause her heart to beat abnormally fast continuously, retain more fluid, spike her blood sugars making her have to be on an insulin drip, lower oxygen levels, the list goes on and on. So, most of this week was kept trying to keep all those as stable as possible with the steroids on board.

Evie had a lot of wins this week. She was able to be weaned off the fentanyl drip and moved more to oral pain meds. They were able to get her off of the insulin drip and just checking blood sugars every 4 hours. She still has to get insulin poked couple times a day, but her body has started regulating it on its own so well so far! On Tuesday, she was able to come off the hi-flow again. She has been in a limbo with the hi-flow because the fluid retention and steroids decrease her oxygen levels and make her work of breathing higher. We are hoping to keep that thing away, trying to walk is almost impossible with the hi-flow because we can’t leave the room. She also started slow tube feeds last night and is tolerating them great! Such good news! This is the first real food she has gotten through her digestive system in 3 weeks, aside from TPN. She has still been walking like a champ!

There have been a lot of hurdles and I know there will be a lot more on this journey, but she is always up for the challenge. She has finally started moving in the right direction for her recovery, hoping we can stay on this track and keep chugging!

We are excited to get to check out the play room tomorrow and see all of our visitors this weekend!

Thank you all for your continued prayers and support. We are so lucky to have such an amazing team behind us! #GoTeamEvie

Watch the video below of Evie walking and showing off her superhero strength!

trim.37F90035-70E0-47A9-A2E6-65B30AF80EA6.MOV5.19 MB

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