What do we choose?

 My son was admitted to the children's hospital a few days ago, three days ago to be exact but it feels like it's been a lifetime. We had to come in because of some increasing breathing issues. These issues only present during sleep. We have come to the hospital before for the same issue, maybe a year and a half ago. During that admission things went from bad to worse as my son ended up in status epilepticus while his breathing struggles were being investigated. Things happened, he was given medications and sedated until his brain was slowed down enough that the seizures stopped. We were lucky, there appeared to be no permanent damage from the seizures. The neurologist adjusted some medications, and the vagus nerve stimulator and made sure we were recovered enough that in terms of a seizure perspective we were safe. We also saw a team of respiratory doctors, the ran tests and ordered a sleep study. The respiratory doctors saw evidence of apneas, hypopneas, and desaturations however they believed it was being caused by the vagus nerve stimulator and therefore it was up to neurology to fix things. Neurology did a few more adjusting, lowering medications, changing treatment plans, and watching. 

Meanwhile we tried to just keep going and adjust to our "new normal." This is something we have had to do a lot as a family, with a palliative condition there is no cure, only symptom management. So as our son goes through periods of decline we often are given a new baseline for him and a "new normal" way of life.

This time our new normal included trying to find a way to make sure our son survived each night while the we fought to be heard, fought to get help. My husband and I spent so many sleepless nights listening for our baby's breathing, watching for his chest to rise and repositioning him when he started gasping for air. We tried to find a monitor that would alarm if his oxygen levels dropped, we bought four, yep FOUR different monitors, the all advertised oxygen saturation monitoring and alarms and yet the alarms were for blood pressure or heart rate. We found two monitors that were approved for overnight use (as opposed to spot check monitoring), neither of them alarmed - they only vibrated.

This struggle went on and on, we talked to our doctors. Every single one of them suggested another sleep study and a consult with an ENT. Our neurologist could not put in these consults and our new paediatrician was nearly unreachable. I accepted this was just the way things were and that maybe eventually we would get our ENT consult. In the meantime my younger child was going through their own struggles and needed extra support too. We pushed through, we kept going. I spent hours researching both how to support my youngest child and how to get help for my oldest child. 

Things came to a head, my son seemed to be getting worse. He was doing so poorly I hadn't slept in a full 48 hours. Finally we decided it was time to come to the hospital and push for more help.

We have only been here for three days but in those three days all we have heard is more of the doctors passing it off to the other someone else. We have again heard those devastating words, "We don't know what to do, we have no idea how to help." We were told that the only answers they have is to turn the vagus nerve stimulator off and treat the breathing or leave the stimulator on so we still have some seizure control and do nothing about the breathing. I don't even know how to start to process that. It's devastating to hear that we are in this place again. What do we choose? How to we give our baby the best quality of life? How do we help him?