Post BMT +192

+192

Most of our appointments this week were via telehealth. Today we were at main campus for chronic pain clinic.

Tate really started struggling with increased pain again this week. Increased nausea and stomach pain meant less attempts at eating and fewer feed increases. Tpn was reduced this week per last weeks appointment so Tate was also given more “strict guidelines “ on what she needs to eat/drink each day. 16 oz of liquid, a small “meal” and a snack. Doesn’t sound like a lot, but she’s struggling to meet her calorie requirements. It’s okay. Any progress is progress. And getting off the Tpn is slower than we’d like, but she’ll get there.

The leg pain has been really miserable. Trying to walk often has Tate in tears and she’s unable to put her heels down to the floor. Arms hurt as well but don’t need to support her body weight. Tate’s pain Dr. today said she’s having a form of myopathy…inflamed muscles. You can have a delayed response to severe illness. With Tates multiple hospitalizations and sepsis in July/August, it’s her bodies response now. Treatment is meds, pt and patience as it can take a long time to calm down. We are working on weaning off the fentanyl patches in order to try another med. We went through this pre transplant and it was miserable. Praying for an easier transition.

Our goal this weekend is to keep Tate fever free so we can take her to Milwaukee on Monday to see her siblings. Attempt #2.

If you didn’t see the update…Lilly is home! PTL!

Keep baby Chloe in your prayers as they attempt more chemo and a painful antibody treatment. Also continued prayers for Kody as his mom searches for other treatments to try and for baby Autumn who is getting closer to her long awaited thymus transplant and will be heading to Duke, NC!

Tate's Grandpa Tom also went home today. Prayers for he and Grandma Sandy as they navigate a new world wheelchair bound.