At the start of the school year Mya was enrolled in a new program with our local fire district for children with significant medical needs. This puts her medical information, baseline health status, hospital preferences and our wishes on interventions in their hands before an ambulance arrives at our home or school should Mya have an emergency. This means when we call 911 they aren't just coming to see a 5-yr-old with a history of CP and epilepsy in respiratory distress. They are coming to see Mya. And that distinction can make all the difference in kids like Mya who are the most likely to need help. And so last week when we called I could focus on finding a solution for Ella and Clayton and notifying Bernie that he needed to wrap things up at work. They barely needed me to relay information on my child. She was out the door as quickly as I could get my shoes on and Bernie beat them to the hospital.
Mya had a short stay and was home again the next day but with more questions than answers. We have become used to her going through cycles of excessive sleep but now she is also adding periods of hypothermia and low blood pressures to these cycles. She had a systolic reading of 42 following a week+ of excessive sleep, low temps and intermittent respiratory distress when we called for an ambulance. They were treating for sepsis in the ER because they were assuming there must be some big infection to explain all that she had going on for the last few weeks. But all the labs came back negative. The only thing they could point to was possible pneumonia lingering from her aspiration pneumonia in November. So we are treating for pneumonia but also wondering if this is just her brain and another new normal.
So now we are left to wait and see how she responds and if these cycles will continue. We are increasing some fluids at night to hopefully avoid some of the lower blood pressures and low blood sugar readings they found inpatient. I got her to school for a few hours this afternoon after working on the logistics of sending oxygen with her but she is still having a hard time staying alert during the day even when we think she is sleeping at night. We want her back. We want her at school. We want to leave the house as a family and not live this tag team routine we have been playing since Christmas. We did finally get her TV back up but we still want her days to extend past her bedroom door. And so we are working hard to be patient, to give her time and to trust.
