Post BMT Day + 127
Post BMT Day +127
We are inpatient again on the BMT unit. Tate has deteriorated over the last 5 days. Stopped eating/drinking, increased pain and fatigue and tremors. GI system completely shut down for over a week. Last night things got especially rough with one of the worst migraines I’ve seen her have. Extreme tremors and jerking and talking a lot of nonsense. I watched the temp climb over a couple of hours and took her into the ED at 3 am. Blood cultures sent off, antibiotics and fluids run. We got to her room a little before 7 this morning.
Yesterday was a doozy from top to bottom. Mrcp MRI at 8:15. They didn’t like how she looked so we called bmt first. BMT didn’t want to see her until her scheduled appointment the next day (today.) we proceeded with mri. Took longer because of the involuntary movements. Halfway through they realized they forgot to run the pregnancy screen (mandatory for girls 10+) Tate was too dehydrated to go as she’s put nothing in her mouth the last several days. Nausea was in full force and she was handed a cup of water. No bueno. Hunted down a syringe to put water through her J. Finally went 8 ml Only need a drop!
Proceeded with MRI, missed her GI appointment. Jumped on to GI telehealth an hour late and her dr took one look and said, she doesn’t look good. A couple keyboard taps and we were sent to bmt. Bmt ran labs, gave her fluids, dressing changed, got a shot to help with the opioid induced constipation and sent us on our way thinking everything was explainable by constipation and meds. Tate climbed into her bed at our apartment and things started to go downhill which eventually landed us here. I have an ongoing dialogue with God when I know something’s off but labs look decent and I need something measurable so the docs have something to grasp onto. “God, it’s time. We need a fever. A good one, over 101 (bmt parameters is 100.4 with a central line.)” Her temp is 100.1. “Nope. Not going to cut it.” 20 minutes later, 101.8. “Got it. Thanks God” “Time to go Tate.”A little strange but when you’ve spent years in the chronic illness world, prayers aren’t always asking for healing, but direction, support and answers, sometimes in the form of getting sicker first to get to healing. If you’ve lived it, you get it.
Grateful to see her resting more comfortably. Grateful for support and to not feel as alone as I did yesterday. Grateful for an inpatient team this week that knows Tate and cares.