Part 2: Children's Hospital
***Potential triggers***

So we left off at L's admission to the hospital.
The imaging showed immediately that it was bad. The entire right side of his brain was affected. There was no clot, and they couldn't understand why the blood flow had stopped to half of his brain. I'm not a neurologist and I don't understand all of the terms that were thrown around at that time. I was at rounds every morning listening, but the team always seemed so puzzled by his presentation. They settled on channelopathy as the most likely , but they had to do genetic testing to see if they could find the cause. They reinforced what the pediatrician had said when he was a baby, that it couldn't be mitochondrial in nature because it was inherited paternally. They decided to do a muscle biopsy anyway to be 100% sure.

"Abstract Channelopathies are a recently delineated, emerging group of neurologic disorders united by genetically determined defects in ion-channel function. These disorders are characterized by a prominent genetic and phenotypic heterogeneity that can make them challenging and bewildering to understand." nih.gov

He was also now having seizures. He was completely unresponsive, but he was at least breathing on his own. The seizures, as the EEG showed, weren't localized to a specific area. They were EVERYWHERE and they were never completely stopping. Before one would end, another would start in a different area. They started trying medications to get them under control. This would be a long process. The hospital stay is a little fuzzy for me, like I don't remember the chronological order of a lot of it. I think it was just all too much for my brain to process at the time. I'm working on it now, but the rest of this part may come off as a little disjointed (that's how it is in my head).

I remember that we moved a LOT in the first 6-8 weeks at Children's. We would move from ICU to Neuro, back to ICU... rinse, and repeat... It was always something different though. It felt like every day there was a new symptom or test result that was stumping everyone. They called in experts from Baylor and The Mayo Clinic for help, and I was even able to track down Sleepy to go give a DNA sample in Florida so that the doctors could compare it to L's. The results would take months.

I remember that I was told regularly that I needed to accept that L would never walk or talk again due to the damage to his brain, and that he would likely not wake up at all. They were always gentle and kind about it, but I know they thought I was in denial. Maybe I was. I just always felt like he was still in there, and I wasn't going to give up on him.

I forgot to mention earlier that whatever this was had ravaged Sleepy's family. He got it from his dad, who had passed away in his early 30s. His half sister had also inherited it, but she had passed very young. 19 or 20. Sleepy was the only one left with it, but he had come back from several of these "events" by this point. He was still very much able to walk and talk, and he credited cannabis with keeping him seizure free. (I mentioned all of this to the doctors, especially since his seizures were far from controlled)

The first positive thing I remember was one of my favorite memories ever. The neurologist came into the room and was talking to me and my mother. His back was to L, and we could see him over Doc's shoulder. I don't remember what I said to prompt it, but the neurologist said something to the effect of 'You need to accept the fact that this is likely permanent. He is not the same person anymore and never will be'. Before I could respond I saw movement from L's bed. It wasn't a seizure though. His left hand raised up slowly, and his middle finger extended upward to the sky. My mom saw it at the same time and said "He's flipping you off!!" The neurologist had time to turn around a see it before it dropped back to the bed and L was out again for a while. It was better though because I knew for a fact that HE was still in there. They stopped telling me that he wouldn't wake up, but they did stress that speech and mobility would be destroyed because of the parts of the brain that were involved. I didn't care. We would figure it out as long as I had my son.

It was around that time that they decided to try an IV drip of ketamine to stop the seizures. I hated everything about that 3 days. L would open his eyes and you could tell he was hallucinating hard. He was terrified and would try to kick and swing, but he never made eye contact or showed any sign that he could actually see us. He would later tell me that he was "fighting demons" and he can't watch Supernatural anymore. It was one of his favorite shows at the time. I had been pushing for cannabis treatment for weeks at this point and I finally demanded that we try because the ketamine was NOT the answer. They tried to get approval for epidiolex (FDA approved cannabis-derived medication), but the hospital and insurance wouldn't approve it for him at that point. I was able to convince Children's Hospital to allow me to sign waivers to bring in my own. I immediately went to a dispensary (Denver is FULL of them) and was able to get him some drops that were made specifically for seizure disorders. Within 48 hours of starting them, his seizures had decreased by about 70% and they just continued to improve. L was covered in bruises from his "demon fighting", and we had to make our own padding for the bedrails because the ones that velcro on weren't cutting it.

They told us that our projected discharge would be the end of April. I started looking into CNA programs so that I could become his caregiver. Colorado is one of the states that actually allow family members to get paid for caregiving. It was obvious that I would not be able to leave him alone to go to work, so we had to come up with a plan. I pivoted from animals at vet tech school to humans at CNA training. I feel very lucky that the home healthcare agency that I signed on with paid for my classes and that I've been able to remain employed as his caregiver for the past 5.5 years. As I was taking classes, L was coming back to us. Every day I would get back to the hospital and mom would tell me about the improvements. At first it was little things like eye contact and small movements of his face or hands. Limbs came back one at a time, the arms before legs and left before right. He was still unable to speak, but it was obvious that he understood what you said to him and he wanted to communicate. The hospital gave him a new IPad (donated by an anonymous local family) with a really cool program for communicating. There were buttons for common words with pictures for identification. You could also make your own buttons for words that you use often and pull up a keyboard for typing. It would then "talk" for him and say whatever he had put in. It became clear very quickly that his personality and weird sense of humor were intact.

He was still having seizures, but not nearly as many. Only around 10 a day at the most. He was able to get up into a specialized wheelchair for a few hours a day in small increments. It had head and neck support because he was still very floppy and weak. The genetic tests came back. They showed a few gene mutations that L and Sleepy shared, but none of them were "known to cause any issues". The geneticist told us that he was sure they were the key though. He told us to retest every 3-5 years for updates.

Over the next two months he slowly regained strength and the ability to stand up, and then walk short distances. His speech started to return, although he had severe aphasia and apraxia. He had trouble finding the right word in his brain, and even when he found the right one it was difficult for him to say the word. This also got a little better every day until we were finally ready to go home on April 25. During this time I also moved us from our upstairs apartment (absolute craphole) to a nicer ground level apartment with only one step to get up from the parking spot to the sidewalk. My 1995 Ford Taurus also finally called it quits, and my mom was generous enough to buy me a new *pre-owned* car. I'm very grateful for all of her help, but I can't help but feel like she's trying to make up for shortcomings and mistakes in raising me. I'll take the help either way though if it benefits my son. His discharge truly felt like the beginning of a new chapter of our lives. I still didn't understand how drastically our daily lives would change though.

That's all for now. I'm sure I'll come back and update with more of the story.