Childlife specialist Lauren
Today was a long but informative day. 3 long appointments at two campuses.
We met with surgery (Still on for Tuesday, the 21st!) and Tates GI Dr. and a nutritionist. Tate will have a second central line placed on the other side of her chest from her port. Called a broviac, it’s meant for longer term access. Her morphine pump will be switched from her port to the broviac post surgery. We have the best infusion nurse that has saved Tates sensitive, rash prone skin, but to be de accessed without all the sticky bandages and no needle will be nice! This broviac is needed for Tate to receive the bone marrow transplant.
Tate will also have a G-tube placed into the L side of her stomach. This is a catheter that goes directly into her stomach for nutrition and meds. NG tubes tend to cause too much vomiting with Tates sensitive gag reflex, so this will be easier once healed. Tatum is currently having a hard time eating or drinking enough due to nausea/vomiting. Post surgery they will run a slow continuous feed while trying different formulas ti find one that is easiest on her digestion. Once that’s tolerated they’ll move ti bolus feeds on a normal schedule. We learned today this will take more than a one night stay, but we’re still hoping to make it home for Christmas.
The 3rd part of surgery is the ovary removal for both hormone and fertility preservation. A courier will fly it to Pittsburgh to be frozen and then on to MN to be stored. After treatments and BMT, it can be used for natural hormone production and eventually for fertility.
We also met with genetics today. They now believe Tates MT8 is likely acquired and want to do more genetic testing on her to ensure there isn’t something more contributing to the autoimmune and auto inflammatory issues. Tim and I will also be tested. They want this testing back before transplant and have talked about delaying until it’s back. We are tired. Pray insurance comes through, the lab works quickly and results just reassure that we’re on the correct path.
And the highlight was Pringle and childlife specialist Lauren. We weren’t able to make the Christmas parade but Tate got a happy greeting from Pringle on our way out and a sweet bear from Santa.