June 8, 2026
If you know Keira, you understand that the last thing she wants on here is her face in a hospital bed. So instead…cozy socks in a hospital bed.
Today felt incredibly slow until it didn’t. But we made some progress. The best news is the endocrine team took both Addison’s AND Adrenal Insufficiency off the table. This is a big win that we are so grateful for. Still vetting out the pituitary but it is likely just a benign cyst.
This mornings news brought neurology and cardiology in for closer looks. Keira is back on telemetry, but neuro is leading the charge. We’re waiting on MRI’s of her spine and pituitary to rule in or out a CNS leak and/or neurogenic orthostatic hypotension. The leak is preferable as there’s a fairly simple fix. Praying for that!
We had a scary evening. Keira had a terrible migraine and then told me her face felt funny on one side. When I looked at her I could see the left side of her mouth drooping. I ran out to grab a nurse and it was worse in the minute I was gone. They called a stroke alert and our room was quickly full of providers. The sensations on the left side of Keira’s face and body were decreased too. It was honestly terrifying.
Then…In front of our eyes it got better. At that point, they felt confident it wasn’t a stroke, but is a complex or hemiplegic migraine.
As the night went on, Keira had another episode, worse than the first, this time also involving her jaw and neck and chest. Very, very painful!
This continued, each episode closer together, more painful and worse than the last. It was definitely spreading and quickly becoming more than she could tolerate. I remembered I had seen this before with Tate years ago. Dystonia! Caused by a medication keira also has been getting for her migraines. Benadryl is the antidote and she’s been on loads of high dose iv Benadryl with it already. Not a typical reaction. So now we dropped that med and just give the IV Benadryl with the hope that we’ve closed that door too. Treating the migraines now is another challenge.
It felt like too much to be so far away yet tonight, so I’m geared up for another night in this chair. Just have to say it again….Children’s, the way you also care for families is simply the BEST! I don’t think there’s a lot of moms sleeping over here.