This girl continues to exceed all expectations! Yesterday she came out of surgery a little groggy. When I asked how she was feeling she said “I am excited, the surgery went exactly like he wanted and a bonus stent was placed”. She managed to write a note for her floor nurse asking if they could help get a cupcake to Kelly for his Bday. The nurses came through in assisting with her request and even came in to sing to Kelly. By evening she had perked up calling me to ask if she could make plans with friends. The best part was her symptoms began to resolve. When I say symptoms I mean extreme, extreme itching, dizziness, headache, some type of altered mental confusion, fatigue, pain, nausea and more. She went to sleep encouraged and confident. This morning her labs showed much improvement and they are discharging her a day early!
We have a confirmed eviction date of 2/27 for her Pancreas, Gallbladder, Appendix and Spleen. It is confusing when you hear (TPAIT) Total Pancreatectomy with Islet Autotransplantation. The short version is there is no cure, the PancreASS, as I like to call it. The pancreas does not regenerate and transplant of the pancreas is highly unsuccessful. The word “Transplant ” in the TPAIT refers to the removal of the Islet cells which are responsible for Insulin / Endocrine function. Those cells are then transplanted into the liver and over time the hope is the liver will produce Insulin. The pancreas shares blood supply with several organs so they all have to go.
The goal of this surgery is to stop the chronic pain and reduce the associated issues the inflammation is causing throughout her body. In addition the gene mutation puts her at a higher risk for pancreatic cancer so we will be reducing that risk greatly! With daily maintenance she can live without all of these organs.
It will take a year before we know if the islet cells have grafted so for the first year she will be Type 3 C Diabetic. She will wake from surgery with a Dexcom Glucose monitor and an Omni Pod Insulin pump and a bunch of other tubes. She has already resolved with the fact that the islet cell piece may not work but it is worth the trade off not to live with the pain.
Two days ago I was a mess of worry seeing her lose her spark and fight and seeing the tole this was taking. She has a renewed spirit and faith no doubt thanks to Prayer!
Prayer request- Please pray for Kelly and Scarlett as they drive home today. It takes a little over 7 hours. Please pray for her continued healing and all liver issues to resolve. Pray that she regains the strength she has lost over the last few weeks. She is going to need it for this next round of fight! Pray for her mental peace that she is able to let go and not worry about homework or anything unnecessary. Pray for our family as we try to plan and organize for this next phase of her fight!
Much Love!
Alissa