After a really rough night last night, today was a pretty good day. Our favorite nurse was assigned to Dylan today which was gladly welcomed.

Dylan was started on an IV nutrition regimen last night, which she is tolerating fine. A PICC line was installed today — that’s similar to a chemo port but is in the arm instead of the chest. Dylan handled the procedure really well. That can stay in as long as she needs it and is a lower infection risk than a standard IV line. It will be used to deliver her nutrition and some other things. She’ll soon be down to just the PICC line and one regular IV line.

The endocrinologist came by and discontinued Dylan’s insulin drip. She has been transitioned to standard insulin injections every few hours, but still with frequent glucose checks. She will eventually receive a continuous glucose monitor and an insulin pump. But for the next while, she’ll be treated with standard insulin injections while her new “normal” is established. Her blood sugar continues to fluctuate, but her body is just getting used to a lot of changes right now. 

The pancreas is best known for producing insulin, but it also makes some enzymes that are necessary to digest food properly for absorption. A gastroenterologist has been tasked with helping Dylan with this aspect of losing her pancreas. Dylan will have to take pancreatic enzymes with every meal for the rest of her life, but the doctor said it’s quite straightforward and there are a lot of “right” ways to do this part of things, which is nice to hear.

Dylan’s liver numbers continue to improve and her liver seems to be doing great and causing no trouble. We think that is just remarkable.

She felt quite nauseated today so she got an anti-nausea patch and had some other medicine to help. Her pain levels were higher today, so they might make some changes to her baseline pain medicine regimen.

The biggest victory of today is that Dylan’s bladder is doing what it needs to do, without a catheter. She also sat in the chair for a while again today. She’s started to look at her phone a bit. It’s nice to see that bit of normalcy, but she is still too sleepy and medicated to look at it for more than a couple seconds at a time. 

Our girl continues to amaze us with her fortitude and determination. It was a busy day and we are hoping for a more restful night than she had last night. Thank you, as always, for your continued support. It has strengthened Dylan and her family so much to know that everyone is out there rooting for her.

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.