1 year + 54
1 year +54
Another LONG day spent in the ER…with Keira. She woke at 5 am vomiting again. She had multiple days over the past week with intermittent vomiting. We hoped this was the same. By 7 am it was apparent that no oral meds were going to stop it. These episodes of vomiting are like nothing I’ve never seen. Constant and completely all consuming. Sweating and rigors. It’s truly awful. Stomach pain started on the way to the hospital and was extreme by the time we got there and into a room. Fentanyl, morphine and torradol and every iv anti emetic med they could give her had her finally resting over 6 hours after it started. 10 hours, two ultrasounds, several pokes, fluids, lots of labs and finally a CT scan showed an infected kidney, stone in her appendix but mostly landed on what they think are abdominal migraines. She went home with nausea meds and antibiotics and we were told again that she really needs to see neurology and potentially GI. Seems every time we go in we come out with more complexity and the need for more appointments.
I spent several hours working through neurology referrals this last week and was told a 7+ month wait with anyone at University. We have some hope of getting her in July to see a different group or can head back to FL who could literally see her next week. Keira’s mayo neurosurgeon called me today, in the ER, while out of the country on vacation. Genuine kindness and caring wrapped up in talent and brilliance. Just wish he was closer! Going back to FL gets us no closer to establishing care here in CO. 18 years old and a now complex medical history with ongoing issues stinks! Parents have little control until care is established and the provider knows the family. 21 to drink a beer, but 18 to make life altering health decisions.
Keira is already sleeping for the night at 7 pm. She is wiped. Praying for a quiet night!