First off, our patient continues to be a total rock star!!! Yesterday was full of some good news that included Dylan getting to remove her wound packs from the surgery and her miracle marks are going to be so amazing! What an incredible job the surgeons did in her procedure.

Dylan was able to get a full go ahead to start with some sugar free fluids and jello. Goals are to try and get the tummy works going again and the doctors have some ideas for that as the delicate balance of letting her sutures heal properly and continued work towards Dylan being able to regain function. It will take some time but so far things are going pretty well.

Pain management still seems to be an issue and there are difficulties that keep arising from lack of sleep. These things take time but Dylan is so stoic and we know how hard she is working to keep moving forward. With sleep it’s really hard to get a full day of rest when the staff (who are excellent) are constantly trying to take care of you 😉 So we are really working on room management for both parents and child to help with rest. Hopefully that improves over the next few days as the pain is less intense. We will continue to work today on finding alternative options for Dylan to be comfortable and heal at the same time.

Dylan’s blood sugars are getting closer to the new levels that the doctors are targeting. They had been really high (kind of on purpose) and now are nearly into the high-normal range. This is a gradual process that they’re taking slowly and it seems to be going well.

One big event from yesterday is that our superhero was able to get a shower for the first time post surgery. I’m sure this seems like a small thing, but after major surgical procedures it is amazing! Other goals for today are to maybe get some laundry done, dote on the heroic caregivers that are with Dylan 24-7, and get the tv up and running with some fun movies or shows to watch.

We didn’t get yesterday’s post up because it was a travel day with an auntie going home to switch out with an uncle who has just arrived. All our hope and love is going into Dylan and we continue to appreciate all of your positive statements and support. More soon I’m sure…

-c

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses.