Hello everyone and thanks for keeping updated on Dylan. To be perfectly honest I’ve been kinda waiting a few days with the hope of some good news to share as we are getting very close to the holidays.

Last Thursday Dylan had a bit of a setback which is one of those unfortunate consequences of a major surgery like this. Her mobility was really doing quite a bit better, but as you know these things are a forward and backward progress a lot of the time. My suspicions are that as Dylan recovers her core is really affected in terms of stabilizing her movements on a daily basis. Knowing some of her exercises and efforts I think this probably put a lot of strain on her back muscles.

Last Thursday night Dylan’s back went out and she started to experience terrible spasms and pain that continued for days. The pain was so great that it really affected her, and her appetite, and just about everything else in her recovery, sleep, and healing. This concerned the doctors of course, and was a difficult process especially when we had been trying to project possible discharge dates. We know Dylan is really wanting to be able to leave the hospital, and I know this was a major blow to things emotionally as well.

Over the weekend as Dylan tried to rally and eat there were also some complications with her blood sugar, and the new monitor was also not working well. This resulted in a lot more finger sticks and chasing of levels with insulin shots too, not super restful. However some leveling off was seen yesterday so hopefully that is getting back on track as well.

Regardless of a lot of details that I know are present in the past week, it has been a rough one and hard for Dylan and her caregivers. However we can not be more thankful for the amazing progress our patient has made regardless of these challenges. She is nearing the one month anniversary of her transplant as we tick over into the New Year, and this is just incredible to see where she is at today compared to Thanksgiving. We are always so very grateful.

Some positive news is that the medical team was trying to plot for a discharge today. Of course we all don’t want to get our hopes up too much, as with transplants like Dylan’s there are wrinkles that can appear at times…so care and caution are usually the name of the game in a day by day plan. We wish you all a very happy holidays and thank you for your continued thoughts and prayers for Dylan. As always, much love to you all and your families during this time. ❤️

-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.