June 13, 2026
We are home!
Keira was actually discharged yesterday late afternoon. We both got home and slept. Such a trying admission with zero privacy or chance to rest. Keira is still battling pain and nausea. And me…..just so tired.
Keira had called that morning at 4 am that they had come to get her for the mri that once neuro had signed off, we were told was canceled. The MRI didn’t get canceled, but the meds to get her through it did. When I arrived in the morning I was frustrated to learn that not only did they not listen to my 21 year old, but also did the wrong mri, repeating what had been done a week and a half prior. They had done a basic brain MRI, not the pituitary study to look at the “cyst” that shouldn’t be able to be seen on a basic brain MRI. Even with the wrong study this time, the radiologist still found a tumor (not a cyst)on or near her pituitary and recommended a pituitary study-THE MRI they were supposed to do to start with. This is different than what they thought previously was a cyst and definitely could be contributing to her symptoms. The primary hospitalist team refused the radiologist’ recommendation, saying since neuro and endocrine had already signed off, we’d have to do it outpatient. They told us she needs scopes with GI to look at the dysmotility and nausea and a Cytoscope with urology due to significant non infectious cystitis found on ct and mri. But again, outpatient. Keira was still needing pain meds and nausea meds at discharge. They suggested she stay for symptom mgmt, but with no plans to get to the bottom of the source, that made no sense, so we chose to go home. It seemed the better option to actually get closer to some kind of resolution. At discharge, Keira’s BP was very high and resting heart rate was in the upper 120’s. By the time I got back with the car, she had to lie down on the bench.
At home today hasn’t been easy on Keira either. We have nausea meds but this abdominal pain is a problem. Keira is pale and dizzy. She just doesn’t feel well at all. She has several follow up appointments this coming week plus the pituitary MRI study. Feels far away, but at least it is more of a plan than we had inpatient.
We are grateful for the things that were ruled out. We had a couple incredibly kind nurses and really appreciated the specialists that came to see Keira. Medicine has its limits, especially when being directed by humans. I remember back to Tate’s earlier admissions, before she had a team that realized she didn’t fit into a box. Those were really difficult times too. We will get there with Keira.
Keep her in your prayers to not give up that we’re going to figure this out and get her back on her feet. And please pray for direction this next week.