Post BMT +170
+170
It has been a week! Filled with blessings to outweigh the challenges, we are adjusting to being home. As of this morning, all the Bigs are gone and Tims brother, Tom and wife, Jen as well.
Yesterday, Tate had what could be her very last 8 hour IVIG infusion. Over the last 5+ years, she’s had 120+ 8 hour infusion days just for the IVIG. Per BMT, the IVIG is no longer beneficial to remedy her CNS symptoms. As of 2 weeks ago, neurology felt differently. So, we are not sure yet where we will land. But yesterday COULD be a momentous day. Sort of a strange way to view it.
Tate continues to run low grade temps off and on. After trying some solid food, she’s struggling with increased nausea and abdominal pain. It’s a good reminder that slow is the way to go for her. Her enteral pump currently won’t charge, so feeds are on hold again until I figure that out. And it’s Friday…the weekend has a way of always winning when logistics matter. But overall, she is managing well and happy to be at home! In fact, she often fights her temp taken when she can “feel” it’s a bit high. She’s desperate to stay home! She’s struggling with what seems to be more neuropathy that is especially painful with warm water baths. Bmt believes it falls into neurology rather than med related, so perhaps we’ll get some guidance next Thursday.
Yesterday during her BMT appointment, we removed another antiviral med and reduced our BMT appointments to every other week! . Bmt PT is still twice weekly and Tate now needs to be seen in the diabetes clinic as a “watch,” so the timing is good because as we back off of BMT, weekly appointments with her outside specialists increase.
This morning I had the privilege to meet Beth and Bruce Babler. They packed their truck with my 3 college kids’ belongings to transport back to Milwaukee with them. They blessed our family in the most unexpected and generous way. Thank you Bablers! We are so grateful.
This week has felt overwhelming in both positive and emotionally challenging ways. Thank you for all the prayers and support and words of encouragement surrounding our family after the accident. Alana and Carol, your meals this week were a blessing. Food has an amazing way of transferring love. Tom n Jen, your presence brought joy. Our beloved, no longer at CHC nurse, Carissa dropped cookies and a hug. I’ve received messages and cards. And of course, having the Big kids home fills all the holes.
This transition feels hard today. This is not where we thought we’d be post transplant but the blessings abound. So maybe it’s the quiet house, or the ”real life” stuff that feels overwhelming or the love and blessings felt. My emotions are all a mix. I feel Gods love and his presence especially through my earthly failures today. Giving thanks for our blessings, which includes our tribe. Praying for our hurting friends, that they too can feel Jesus arms wrapped around them.