1 Year + 181
1 Year +181
Last week was tough. We’re learning that in the current state of frailty that Tate is in, even little viruses are a big deal. Tate dropped weight again despite formula feeds and just doesn’t quite bounce back so quickly. Yesterday’s GI appointment and last week highlighted exactly the fears should Tate get seriously Ill with an infection. A real possibility based on her dropping ANC due to immunosuppressants and now with the addition of another med affecting another cell line. Headed into flu and virus season with no vaccines of any kind heightens the risk to all kinds. (transplant wipes out all antibodies to previous vaccines) Kids typically start to receive them again a year + out, but she’s too suppressed and inflamed. Feels too similar to our time pre transplant while on hospice when she was so susceptible and is an icky place to sit emotionally when we are no longer working to get to the ultimate “healing.” That opportunity is gone and quite frankly, didn’t work like we’d prayed for. So we wait for a new idea to try or med to halt this process.
Tate sees neurology among others on Thursday to address worsening neurological symptoms. Typically, it’s a monitoring appointment as we sit until things get bad enough to warrant risky meds and treatments. You can’t treat what you don’t understand. She has a neurologist that focus on immunology/inflammatory issues, so is a great fit.
Tate has a minimum of 5 appointments each week. I tend to highlight just the new and different. But they’re all important. Tate has been having worsening back pain. We have a rockstar physical therapist that has been coming to our house since before transplant. She’s amazing and was able to pinpoint some rib and muscle issues. She’ll work on that again on Friday. Super grateful for Abbey!
On a fun note, we’ve been caring for a sweet foster pup the last couple days. His name is Miko and he looks like Coppers brother. He is a snuggler and as sweet as can be. 2-3 years old and comes with a story all his own. Being able to focus on and love another creature needing just that is healing for all of us.