The ‘urps’ may sound like a pretty benign word, but when you have just had a major abdominal surgery, it is a big deal. Yesterday Dylan was dealing with nausea, which caused her a lot of almosts but luckily she was able to keep everything down. The ‘urps’ as we call them don’t feel good though. Most of the day was spent trying to get the nausea under control, and things went a little better last night with two medications for the queasy stomach staggered every four hours.

Currently these sensations are more problematic to Dylan than the pain from her surgery. But these and other sensations will come and go through the process. It is made even more difficult because the doctors really want to see Dylan’s intestines wake back up, so there is a pretty strong regimen of Miralax that she is trying to get down. We are thinking that Dylan’s nausea is complicated by some dysgeusia after her surgery, which is a term for altered taste sensation. This can happen with transplants and even the medications used in the process, and may be more of an issue as Dylan continues to transfer to oral medications. For Dylan just plain water has a weird taste.

We were able to get approval for some sugar free gum and candy yesterday to help. Jolly Ranchers are onboard and hopefully will continue to help with the taste issues. It is tough when the road to eating again takes this much time and energy. Dylan started her insulin shots which have helped to stabilize her blood sugar levels from fluctuating so much. This will help as she continues to transition her nutrient intake.

Regardless Dylan remains so strong with her resolve and spirits. Her voice seems to be coming back a little bit more and we were happy to see her finding some time to steal some Zzzs yesterday. The staff has been really great about trying to keep the environment as calm as possible.

Today we hope to focus on the same, continued rest and recovery. Maybe a short walk to the hallway outside her room today?!? This would be amazing progress for her. Dylan was able to stretch out a bit and slept in mom’s bed for some of the afternoon, which was nice. During the week there are a few more comfort resources available too that we might look into today. More soon and looking forward. ❤️

-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.