March 11, 2025
Day 39 & 40
Yesterday took everything we had to get through the day and I was too tired for an update. So tonight you get a two for one.
Tate’s left arm continued to show its colors into today. And yesterday we noticed that her chest where her central line was inserted was swollen and very painful. Another ultrasound revealed a pocket of fluid. The fear was a leaking central line causing extravasation. Watching it further today, it’s looking bruised externally. Surgery feels it’s bleeding from trauma from the line surgery. That doesn’t sound good, but it’s better than a broken line. The line still May be the culprit for the arm issues. But that remains to be seen.
Care conference again yesterday afternoon brought a big group together once again. We are running out of options to tackle this pain. We landed on trying a continuous ketamine infusion again. Tate has had many of these, even up to 10 days. Most have worked well for pain but ended badly with a severe and scary psychosis reaction. Every time we say “never again.” But…here we are, trying a lighter protocol for 3 days. Tate is scared and we’re all just praying for a great pain response with no side effects.
We have one more option for pain to try if the ketamine doesn’t work. But it’s about a two week inpatient process of weaning fentanyl and dilaudid and adding another medication. We are trying so hard to get Tate to a place where we can bring her home.
Many have asked about the bone marrow biopsy. We’re still waiting on the genetics. The bone marrow exam did show some “dysplasia,” which is essentially early bone marrow cancer again. But Tate’s hematologist feels it looks similar to August’ BMB and the changes noted are more due to the perspective of the radiologist reading it. Someone else is taking another look and the cytogenetics will hopefully show no MT8 has returned and no new mutations and that Tate’s bone marrow is still as close to 100% Patrick’s as possible . In short…we are still waiting but are feeling a bit better than we did as we sit with the current results.
It’s Birthday week for Tate. We’re trying hard to not let this ketamine infusion hijack all the fun.