Post BMT +54
Day 116
Post BMT +54
I REALLY wanted to adopt Tate’s position and pull her hat over my face all day today too. For Tate…it was day 1/2 of IVIG. Lots of meds to prevent reactions essentially give her an all day nap. No changes otherwise as IVIG frequently makes her feel flu-ish and we didn’t want to muddy the water with changes. Both CMV and EBV virus tests came back positive today. They’re low levels, but the stress and worry that comes with both being active creates a churning in my stomach. These can both be detrimental to a healthy outcome.
The last couple days have been hard for me. We are day +54. Tate still isn’t able to really eat. Still on IV nutrition, IV fluids and IV meds. Not moving much. Nausea and diarrhea daily. Pain continues And she’s so fatigued she sleeps much of each day. Yet I hear on one side, “all normal.” On the other side, “She’s not progressing as quickly as we’d like. Should be more manageable by now. Must be Tate.” Can’t be both.
This last week Tate received concrete news of two additional diagnoses and was hit with either a GI bug or unexpected extreme withdrawal symptoms. Either way, it all set her back physically and emotionally. Tate has a huge team, no proven path or protocol and lots of passionate opinions. I’m grateful for the invested, caring, individuals. But navigating all these emotions and opinions is absolutely exhausting. We received a set direction a year ago this month, when the first genetic panel came back showing that further testing was needed. A month later we received concrete diagnoses of behcets and mosaic trisomy 8 to add to the lupus and multiple other issues already discovered over the previous 6 years. We already knew something was wrong, so this new direction actually brought relief and a glimmer of hope that something could be done. Move forward through a year that was fraught with medical stress, trauma, fear, fatigue and more days in the hospital than out and here we are. We got to transplant. Tate got through transplant. To still be fighting some of the same false ideas and opinions we came in with and an uncharted path feels defeating tonight. Please don’t mistake exhaustion with ungratefulness. We are grateful. We have hope. We are aware things could be much, much worse. But the reality is tonight I sit feeling a lot defeated. A lot frustrated. A bit sad. Pretty alone and Thoroughly exhausted. But through it all being reminded that HIS mercies are new every morning. And HIS grace is sufficient and made perfect in my weakness.
Thank Goodness. ❤️🩹