I am overwhelmed I think. But that’s not what she meant. She means if he becomes too dehydrated or stops breathing. At the moment with our oxygen concentrator, our tube feeds, our rescue medications, we were keeping Braxton alive.
We had been in touch with the hospital many times over the past few days. It was December 2014, I was 25 weeks pregnant with Baby Two, Brock was home for the holidays. Braxton had been started on Sabril for his spasms, but he got worse, so after a trip to emergency, maxing out sabril, ever increasing seizures, we weaned the new med. We hoped that he would bounce back after the wean, but so far he had continued to slip from us. Our rural homecare had been advising we push to get our son to the hospital for the past few days, but we didn’t know if it would be helpful or more stressful, and so we were dealing at home.
Maybe we suck at giving up control. Maybe we have seen that we know than many nurses and doctors about our son’s rare conditions. Maybe we knew during the holidays the staff we would need to handle end of life decisions were away. Maybe we know even in hospital, we parents do most of the feeding, suctioning, monitoring, and care of our little boy, so why bother. But this night it was too much for me, we had sedated Braxton already that day with our rescue medication, and he was seizing again. The neurologist on the other end of the phone line said we could sedate him again, which is the last thing I wanted to do. Those past few weeks his spasms and then generalized seizures had been increasing in quantity and strength. We basically had one to two hours a day that he was his old alert playful self, the rest of day he was fussy, screaming, throwing up, seizing. Neurology said there wasn't much that could be done for treatment for his seizures, we had pretty much tried everything in the past 16 months since his seizures began. More seizures are just a reflection of the progression of his conditions, they said.
Now I did want help. I wanted some medical professional to say, we just have to do A, B, C, then your son will be okay. There is supposed to be safety in our medical system. It’s a myth we are led to believe, that if something goes wrong with our health, we can go to the hospital, we can see a doctor, we can be prescribed medication, we can be fixed. The reality is there are too many rare disorders that doctors don’t know about, that hospitals don’t know how to treat. Dandy-walker Syndrome and Microcephaly Agenis of Cropus Collosum are both listed of the Global Genes rarelist (http://globalgenes.org/rarelist/) but Braxton is even more complicated than that, having other add-on brain abnormalities. In this moment I felt very alone. I am not a doctor, I am not a nurse. I am just a mom who is supposed to take care of this complex child at home just as well as a hospital of professionals. It breaks my heart to see him have to struggle, suffer, and seize each day, and I’m his best hope.
Braxton survived that night, and the hard days and nights that followed, and the good and bad days since. I haven’t taken him to emergency or had him admitted to the hospital since. He survives not because of the medical system, although we have found a good team of professionals who are working with us. Many people pray for Braxton, and I know that really does help. I continue to fight, research, get approval, advocate, and try alternative therapies. Braxton is strong, he’s a fighter, and he doesn’t seem to want to leave us just yet.