Post BMT Day + 114
Post BMT +114
Monday night Tate’s back pain returned making sleeping tough. Tuesday morning, the movement required to get into the hospital for an appointment with Tate’s GI Dr. left Tate in tears with the nurse wondering if she shouldn’t go to the ED. Temp was up and heart rate was over 150. I thought for sure we were headed for trouble later. We skipped the next appointment, came back to Brent’s Place and got some dilaudid into her.
Tate has been back on dilaudid since. I fully expected her liver function tests were going to be bad again today, but surprisingly, they were better than they had been Monday. A pleasant surprise! So, BMT is even more certain this is stone/gallbladder related and not an issue with her liver. Great news! We won’t know for certain until July 6….insurance delays pushed the MRCP until then. Liver biopsy is now on hold pending MRCP or Liver labs jumping again. More great news!
We had a long day of IVIG today….8:30-6:00. This is the first month of cutting it in half and only doing one day instead of two back to back. Pretty big deal……Tate has been getting monthly IVIG since she was 9 years old. After 6 months, we’ll evaluate again, praying she won’t need it at all!
Tomorrow is a BIG day! Tate and I are headed home for the weekend. Tate hasn’t been home since her admission in December…..6 months ago! I’ve been home twice just for a couple hours each time. We’re both really looking forward to it. The Initial plan was to attend dear friends daughter’s wedding. Tate’s team felt it was too risky and said “Not yet,” so we’ll catch the livestream from our own living room. Lots of organizing today to make this weekend happen. TPN delivery had to come a day early, medications and central line care in place. I’m already feeling like I’m going to forget something but it’ll all be so worth it!
Thank you for the overwhelmingly sweet and supportive words regarding our Keira. We feel so blessed to have this extended family through Tate’s Tribe to not only support Tate, but the rest of us too. We are so so grateful!