No Rest for the Sleepy

Last weekend Jus and I made a last minute decision to go camping! Well, technically we had been planning this trip all month, but a few things happened that made us hesitate. First, we all came down with a slight cold. We were all a little congested and our throats were sore, but other than that we felt great! Even Bryce seemed to be feeling pretty well. Then we started paying attention to the weather and learned it was supposed to rain. We all know the forecast changes daily, so the morning we left we checked and rechecked it to make sure it would be okay. Thankfully it was only supposed to rain the first day we were out, so we decided to go.

Hiking around during nap time

Quick as we could, we packed everything up and hit the road. As we were driving it started raining on us, but it wasn’t enough to change our minds. By the time we found a spot it was done raining, but still a little cloudy. Jus and I hurriedly set up the tent and made the bed, just in case it rained again. Then we were able to sit back, relax and enjoy our time together away from the rest of the world. IT WAS WONDERFUL!

Unfortunately, as the evening progressed we could tell Bryce wasn’t feeling that well. We debated going back home a few times, but it was already late so we decided to see how he was doing in the morning. By six o’clock in the morning we were all awake, which was very strange. Bryce doesn’t wake up until about 9 am, so we knew something was wrong. It didn’t take us long to figure out why he was awake, for he soon started having a BUNCH of seizures.

Snoozing away in the tent

One thing I should mention is that Bryce usually only has seizures when he is tired or sleeping. In the span of four hours he ended up having three tonic seizures (his entire body locks up in a fetal position and he can’t breathe for about 15 seconds) and six spasms (his body will extend out then contract in multiple times in a row, with about 15 seconds between each spasm and last about five minutes). All these seizures happened while he was trying to sleep. This marked the beginning of many restless nights.

We decided to take Bryce home so he could be more comfortable. It was a good thing to, for Bryce’s little cold became much worse (thankfully not as bad as the virus he caught last month and almost had pneumonia). I hate it when Bryce is sick. His little body gets so tired when it’s fighting off an illness. Because he gets more tired his seizures also get worse. Between trying to recover and all the extra seizures he has, my sweet boy is totally EXHAUSTED!

With his current illness, something new has happened. He’s not just having more seizures, they are A LOT more violent (he breaks out in a sweat during them). It has been a rough week on all of us. When he is either waking up or falling asleep, Bryce will have a tonic seizure then immediately go into spasms. He has started crying during these sessions and the pain in his cry has made me feel like we are just finding out about his seizures all over again. It is HEARTBREAKING!

Not-So-Good Morning

If that isn’t bad enough, the violence of his seizures has also started making him puke between spasms. This is the first time anything like this has happened! It has been stressful to say the least. Never before have I had to turn Bryce on his side during a seizure to make sure he doesn’t aspirate on his puke. I also have to work fast with the booger sucker (bulb syringe) to suck out as much vomit as I can between spasms, all while trying to comfort him. It is hard, it is stressful and it is exhausting. Thankfully he doesn’t puke every time he has one of these episodes, only if he has recently ate.

Bedtime has probably been the worst though. He’s been having one of these episodes every hour to hour and a half, ALL. NIGHT. LONG. When he is done seizing, he just cries because the seizures are so rough on his little body. The only thing that helps him relax and fall back asleep is if I hold him, gently rock and sing to him. We are all drained, especially Bryce. He’s been sleeping longer (from 9 pm to 1 pm or later the next day), just trying to get enough rest. I am so grateful for his NG tube right now! I can still make sure he is getting food in him to help him recover from his cold while he is sleeping (or at least trying to sleep).

Can you tell he doesn't feel too great?

Like I have said, it has been a rough week. We have been in contact with both his neurologists, and have a plan. We will soon be getting his Phenobarbital levels checked (which means getting blood drawn) and an increase in medication will happen. I have mixed feelings about this. First, I am excited to get an increase because I know it will help Bryce (even if it is only temporary). On the other hand, it means the Ketogenic Diet we were so hopeful about hasn’t been much help for his seizures. Don’t get me wrong, Jus and I don’t consider the diet a failure. It is for his seizures, but he has been SO AWARE of his surroundings since we started it. For that reason alone, we've decided to keep him on it.