December 21, 2024
This week was a bit of a doozy on an emotional level both with new information and memories. It can be easy to get stuck in the muck especially this time of year when everything is just supposed to “feel” happier.
1 Year ago this was day 12 in yet another admission. Tate had restarted TPN(IVnutrition,) struggled with refeeding syndrome and got a new central line due to infection. Many admissions and infections later, that line is still in place (a record for Tate) and Tate is no longer TPN dependent.
2 Years ago, Keira was diagnosed with a brain tumor. This was and continues to be a tornado that destroyed a lot of things we weren’t prepared for. We don’t share much on this end, but it’s been rough. New growth comes after storms. My girl is strong and above all, she’s God’s girl. And I get to hug her everyday.
3 Years ago, while on hospice for pain mgmt, Tate had surgery to place her permanent feeding tube and add her second central line (she also had a port at the time,) in preparation for bone marrow transplant. On a ketamine drip and PCA, it was a rough time. Not too many days after Christmas she was in the ICU and we didn’t leave the hospital for another 5 months. Lots of days since we weren’t sure if today was in God’s plans, but here we are.
One of Tate’s appointments this week was with the UDN (undiagnosed disease network) in Utah. As a recap: we were referred out to them a year+ ago by Tate’s medical team and were 1 of about 200 accepted nationally.
The soft version is that what we are dealing with is unknown autoimmune/autoinflammatory processes that were switched on by the MT8 prior to transplant. We can’t find the off switch and it’s having a snowball effect. We were told time IS important and we’re being encouraged to see a neuro immunologist at Stanford. The UDN doesn’t have anything more for Tate. We had learned through testing in August that Tate’s brain continues to be affected by a disease process they can’t isolate to treat without suppressing her immune system more. It was tough news then and even more difficult now as even Tate’s CO team was hopeful the UDN would have something.
But…this week our goal is to remain home. Give thanks for all the little things that bring joy, love the people in front of us and prepare our hearts for the best gift yet.