Well our updates from yesterday are a little variable so I’ll try to remember where we left off. Dylan did an amazing walk yesterday morning. True to her nature she might have tried to go a little farther than most others would go, and by mid morning we had sorta fallen behind the pain. This ultimately led to a pretty rough morning/early afternoon time. It was a tough time because aunties came to visit and the pain was pretty bad…but visitors will be back more today as well.

One of Dylan’s drains started to leak at the insertion point yesterday and at the same time wasn’t able to drain. They tried to clear the tube multiple times but the darn thing was just being really stubborn. Of course you can imagine that with feet of tubing inside of you this doesn’t feel very good. Multiple gown changes had to occur and this is also a struggle with Dylan’s mobility challenges so things weren’t super great. Ultimately the decision was made to pull the drain, and it did indeed have a nice plug at one end. So, she is down from 3 drains to 2, but we are hoping (as that particular drain hadn’t been producing a lot) that this won’t impact her swelling too much.

Finally by mid to late afternoon we were able to get back ahead of the pain and Dylan was feeling a little better. Physical therapy came by again and Dylan went on another walk around the hallways. Upon coming back it was time to see if those bowels had restarted and indeed, there was some output. So that was really encouraging news! Dylan hasn’t been super interested in the food options as her pain and nausea have been variable over the past few days, but we are hoping this will come with time.

By evening time it had already been a long day, and everyone was pretty wiped, so we really tried to clear out the room for the remainder of the day. Once things started to quiet down Dylan was able to get a nap and some quiet time in and also watch a little bit of a movie. Paddington Bear is an amazing movie series so be sure to check it out! (I’m secretly hoping we get to Paddington 2 soon 😊) Night time was ok but things were a little louder now that Dylan is transitioning to oral medications as much as possible. Obviously sleep is critical for her so we are trying to help her catch up.

Today we are really working on lots of things, including helping Dylan to advocate for herself before her pain gets away from her. The doctors really want to encourage her to move and walk and use the restroom so hopefully that all starts to become more normal. It takes time though and we know she will get there eventually. I think if we can keep ahead of the pain then these activities will become more normalized.

Please remember Dylan in your thoughts and prayers. As I type this I realize that I try to stick to the mechanical aspects of her journey, but often the mental side of these sorts of things is equally as important. Dylan I’m sure feels pressure to progress but this can be a heavy burden on a young woman as amazing and awesome as she is. Looking forward with grace. ❤️

-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.