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? 

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.