June 11, 2026
Today was another day of nausea, high heart rate, high BP and no definitive answers. They’d like Keira to get upper and lower endoscopies but that is something we’ll pursue outpatient. Keira is still getting headaches, but the terrible migraine cycle seems to have broken with the help of the occipital nerve block.
We took Keira off all pain meds tonight as a trial to see how she does into tomorrow. We’d really like to leave. There doesn’t seem to be much left to do diagnostically inpatient other than supportive care. Instead, we’re asking for help with immediate referrals to work on this from home. We are praying for a good enough night and for discharge tomorrow. Keira got her 4th roommate today.
It seems like we’re looking at another chronic issue which is deflating in so many ways. Keira has worked so hard to get to where she is after such a difficult brain surgery 3 years ago. To see her gains all being pulled out from under her again feels almost unfathomable. Today’s hard conversations left us sitting in frustration and fresh grief. I took keira for her first walk in weeks. The fresh air was nice but she had pretty instant nausea being upright.
Tonight was a beautiful sunset over the mountains. A simple reminder to me that we aren’t walking alone in this big, broken world. I can’t even put into words the level of fatigue and feelings of defeat. But sometimes it helps to look way beyond our immediate circumstances that none of this is for forever.