March 17, 2025
Day 45 & 46
Yesterday the ketamine was turned off after a 5 day infusion. The good news is through careful management, Tate had no reactions. The deflating news is that we really didn’t see much, if any, positive effects on pain.
Today, pain team came back with the next plan…adding a buccal (goes in your cheek) pain med called belbuca, and slowly titrating up as the fentanyl is slowly titrated down and off. We have tried this med over a year ago, but not at the higher dose Tate will get to and not in conjunction with her IT pump. She’ll stay on the iv dilaudid during this. It’ll take about a week, then she’ll come off the dilaudid and her IT pump will be worked on. I’ve been told to set any timeline expectation aside as this will take awhile.
The medical intern on our purpl team solved Tates arm circulation issue today in conjunction with yhe adult vascular Dr’s over at University. They think she has a very rare issue called McCleery Syndrome. It’s intermittent compression of the subclavian vein. Hers is being exacerbated by the central line. It can wax and wane based on where the internal catheter is situated. If it gets bad enough , the only treatment is a rib resection to increase the space around the subclavian. They don’t believe it will increase her clot risk on its own, but we are waiting on the repeat antibody testing for the clotting disorder. We are praying they’re gone and this isn’t a new long term disease to deal with.
The photo today represents the day. Tate wasn’t feeling well at all and slept the day away. All of these extra “little” problems we keep running into would be enough for the average person on their own. The combination of so many things in addition to the big known chronic issues takes Tate’s body through the wringer everyday.
Tim and Keira have been in FL over the weekend and into this week for a family wedding. The boys and Meg are there too. I do love seeing them all together so am sharing the rest of our family too.