The Bryan Family Sampler: Thanksgiving and a Holiday ER Visit

Thanksgiving was in Park City this year. We got there a day or two ahead and enjoyed some pleasant family time.

I'm glad I got at least one pic of the cousins.

Ben's first seizure was around 11 a.m. and he went right into status for the rest of the day with a tonic clonic about every hour. This is where we spent most of the day...in the downstairs bedroom. I slipped upstairs for some Thanksgiving dinner after everyone had pretty much finished. I took it downstairs to eat since I was not feeling like interacting. I knew I would be emotional if anyone tried to talk to me. In the evening Merill helped Andy give him a blessing since the seizures just weren't stopping even with all the extra meds we were giving him.

After one or two more we decided it was time for the ER.

They whisked us right in when they asked if he was currently seizing and I said yes since he was in status.

I believe they tried nasal versed (after I asked them not to administer ativan) and when that didn't work they did something intravenously...now I can't remember what it was. That was the one that seemed to do the trick though and within one or two minutes he had stopped shaking and staring and jerking and fallen asleep.

The sleep didn't last long before he sat up and started asking for his iPad and things.

I was hoping they wouldn't keep us but they strongly suggested it and took us up to a room. Andy went back to Park City soon after.

It was very shortly after they brought him up that I started noticing him slipping back into what I thought was a status state. I kept trying to tell the nurses that he was not doing as well as we had initially thought after the meds downstairs. I could tell he wasn't going to fall asleep (it was around midnight or a little after at this point) He was staring and twitching again. I can't remember what finally got their attention but an EEG was ordered. Depakote was given around 3 a.m. and according to my memory (I don't know if I'm mixing up visits here) he didn't ever fall asleep but was tangled in all his wires and moving around so that I was getting up constantly to readjust him and get his blanket back on so he wouldn't be freezing since they had taken his hoodie off. Honestly, every time I would try and get settled on the couch, one of his alarms would go off, a nurse would come in or he would move around and need to be seen to. It was another awful night in the hospital...not as bad as the one the year before since this time at least he was not mad and yelling and crying. He was just very quietly completely out of it.

In the morning I found out they weren't seeing any seizure activity on the EEG which made absolutely no sense to me since he kept jerking and staring and acting exactly like he had the day before when I knew he was in status...just no tonic clonics this time.

We were, at the time, in between neurologists. Dr Filloux was retiring and they had asked me to choose a new one a couple of months earlier but I hadn't gotten around to it 😕

I was frustrated that the doc that came in that first morning (who was one that I had actually liked the best out of the ones we saw a year earlier) hardly even looked at Ben when he was in the room with us and basically just said that the EEG was clean so as soon as Ben was eating and drinking he could go home.

He was in no state near able to go home in my estimation.

Andy came and visited for a couple of hours. I was glad the rest of the family was able to hang out with family while this was happening.

There was no eating and no sleeping that day as far as I can remember but that night he did eventually fall asleep for a few hours and the next morning I got him to eat some breakfast and he seemed to be much more himself. I had Andy and Matt (Abby was driving her car back to Provo) come and get us Saturday morning and we drove back to Logan.

There was a Utah football game as we were trying to leave and it slowed us down quite a bit as there was so much traffic. So we were still in Salt Lake when we started getting hints that Ben was not doing as well as he had been earlier that morning. We stopped at Trader Joe's (Matt is always willing to stay in the car with Ben while Andy and I run in) and then we stopped north of Salt Lake somewhere for lunch at Raising Cane's. By this point it was super obvious Ben was back in the zone. He was splotchy and staring and twitching! Over the next several days that was his pattern...he would wake up and seem pretty good and then within an hour or two he was back in the zone...as bad as ever.

On Sunday night I called the neuro on call and tried to explain what was going on. She made a couple of, what I thought, were weak suggestions but said that since his EEG was okay she didn't think this was an emergency. I was so frustrated!

Throughout the next week I was calling back and forth between our primary care giver here and seeing if I could get an EEG in Logan at the sleep lab and Primary Children's trying to get some answers. I was getting Dr Brown telling me he was happy to see him but didn't think he could do anything for him and would suggest just going to Primary Children's again (he said our EEG machine here in Logan was not that great and probably wouldn't give us good results) and then I had Primary Children's drs saying that his EEG was clean and not seeming like they thought anything needed to be done.

I felt like a mama bear trying to fight for my cub. I felt like I was "that mom" who was super annoying and of whom they couldn't wait to rid themselves.

We were trying multiple extra doses of different meds we had on hand (diastat and keppra) but nothing seemed to do the trick.

He would fall asleep each night (which was a miracle) for a few hours and then wake up, act pretty normal and then just slip away into the zone. We were able to get enough food and water into him that we weren't too concerned but it was a chore...he wasn't voluntarily eating and drinking. Sidenote...the Doc we saw in the ER asked if we had ever thought about a feeding tube for Ben for these times that he gets like this 😔 yes, it would make these episodes easier but not something I want to deal with constantly.