May 30, 2026
Days 4&5
We got home this evening (Sat.) Although we’re happy to be out of the hospital-so happy! We aren’t home because they figured it out. And the last two days have been anything but easy.
It became obvious really quickly that not having an endocrinologist on staff was a problem when Keira’s lab results weren’t straightforward. We bounced from high dose iv steroids, continuous iv fluids and salt tabs, pain meds and other supportive meds to shutting that all off suddenly despite it stabilizing Keira’s bottomed out pressures. Communication was non existent. Things would just “happen.” Last night keira was running a fever, needed oxygen, had an arrhythmia and BP was really high. She needed a bedside commode as she was too dizzy to get to the bathroom. Today a new provider came on, spent no more than 5 minutes with Keira and said she was discharging her. Discharged with no diagnosis, fever and continued refractory nausea, but no scripts and dizziness and pressures starting to trend lower without the steroids. Keira does seem to be in a safer space currently than when we went in or I would’ve requested a transfer. We can always go back in…where they have the correct resources and specialists. It’s honestly a relief to be out but so stressful to still not understand what almost took her from us.
Never again will I feel frustration towards a huge teaching team. The single Dr. system with little accountability, no push or extra eyes to think outside of the box left us feeling incredibly unsupported and unsettled. So much was left to the nurses then to observe and report. Fine if you have one invested in you. Really really tough if you don’t. This group/unit is used to caring for individuals who’ve lived long lives and are nearing the end. The same practice doesn’t apply to a 21 year old. However, it was evident that for about 1/2 the caretakers Keira had, they saw no need to advocate or investigate. This was an admission we couldn’t wait to get out of. If things go south again, we’ll be headed down to university where they have an endocrinologist, a rheumatologist and an entire teaching team with the desire and ability to actually find a cause and solution. So much disappointment on so many levels. I am that much more grateful for Children’s Colorado! I wish there was an adult equivalent here for Keira.
Thanks for the prayers. Keira still needs them as we continue to look for how to get her back on her feet again.