Today I am not ok.

 Today I am not ok. I’m trying to be, I really am. I have to get up, to keep going, keep fighting. How can I though? How do I keep functioning when I had to put those awful words out there? 

Our oldest has been struggling, his health has declined. We had a big setback. I feel so guilty, like it was my fault, like I asked for it. He was doing so well, his seizures had become so minor that we didn’t even see them everyday anymore. He hadn’t needed ‘rescued’ with medication or his medical equipment in a long time. He was doing really well and I could see as he was feeling stronger and better, that he wanted to live! He wanted to be able to play and run, he wanted to be a kid, and I wanted that for him.

I asked the doctors to start backing off on some of the medications, just a tiny bit, one at a time, very slowly. Many of the medications my son is one basically slow down his brain, this has a sedating effect, meaning he was always tired. He couldn’t even get through a whole day at school, he slept with the pattern of an infant. 

I had big discussions with the doctors, my husband, my parents, I even tried to talk with my son about it. I spent hours on the internet reading and searching. Eventually we came to the decision that yes, perhaps it was time to rebalance the medication. With the seizures more controlled by his vagus nerve stimulator we could safely wean some medication and see if my son could spend more time awake! 

We slowly, so slowly, with strict instructions from our neurologist, stopped one medication. It went well! Really well, but he was still so sleepy. We waited a few weeks and tried another. We saw some things that concerned us. My son started to regress, he was more awake but he also couldn’t focus on anything, he was getting more and more uncoordinated, he was slurring his speech and sometimes becoming nonverbal. We slowed the medication wean. We started seeing more seizures again. We started having to use more emergency interventions. There was so much going wrong so quickly. We reached out, we asked for help. Our neurology team agreed to order an EEG but it wouldn’t happen for at least a month. Our paediatrician stopped the medication wean and asked for more help from neurology. We were told to restart another medication. 

We did, we restarted the medications immediately. We stopped even considering any other possibility than getting our son stable again. As suddenly as the hope and thoughts had appeared, the visions of my baby running free, being a kid, they disappeared and I again found myself in the dark hold of despair and terror. I was back to the horrible place of not knowing if my child would survive. I found myself terrified to be away from him. I felt like he was slipping away and if I could just cling to him, watch him every second like I could maybe hold off that moment. I again reached out for help. Our neurologist said the paediatrician needed to manage it. The paediatrician thought it should be the family doctor who managed things. Our family doctor has not managed our son’s care in years! Our son is medically complex and fragile, hence the paediatrician and numerous specialists.

We have no answers. We don’t know for sure it was the medications that did this, for now it hasn’t actually solved it. We don’t know what to do. For now we have two choices, we can go to the hospital or we can stay home and try to manage. The hospital sounds ok, safe, like maybe we would get some help! Being admitted would mean someone else has to check his vitals, he would be hooked up to all the machines that alarm if anything goes wrong, there would be teams of people running to fight for him if he got into danger. The hospital also mean we would be risking a covid exposure, we would be unable to see my husband or our youngest child. Being in the hospital would mean being poked and prodded and tested. More medications, more sedation, more interventions and tests and hurt. Being in the hospital might get us some immediate help but some of the tests would still require additional visits and being booked by our doctors at separate appointments anyway. Being home means no sleep, it means I sit by my baby and watch and pray and hold my breath that he doesn’t slip away while I shower or brush my teeth. Being home means he can be comfortable, he can play, he can go outside, he can see his daddy and his little sibling. Being home means he can go to school when he feels ok, he has some normalcy and routine. 

Today I am not ok. Today I am being forced to choose for my child. Today I have the devastating task the unbearable burden of truly looking at my child as palliative, of measuring quality of life.