Awake in the Night Time

Well, last night was one of those "dunking" sort of nights. Don't worry, everything is ok with Joel so far. I say with reservation, because after a night like last night I never really know.

We started off ok. I put him on the CPAP and it did take awhile for his O2 sats to go up enough, but then he was ok. As long as they can get to over 90 in a couple of mins., they slowly climb through the night.

So at 3:30 am the monitor went off. It was no big deal though, as his sats were at 98%. It was his heart rate, hovering around 80 that was setting it off. This has happened once before and the respiratory therapist and I both agreed that it wasn't really worrying as it was only down slightly, and everything else looked good. We figured it was just that he was so very relaxed with the CPAP on.

But I had to turn the CPAP off, because though his heart rate would go up when I rubbed his back or arm, within a couple of minutes it would go back down and start beeping. Which would make it impossible to sleep.


So I turned off the CPAP and his heart rate immediately went up. I climbed back in bed, but not even an hour later the monitor went off again, this time (no surprise) because his O2 sats were falling below "normal." So I got up again and put on the nasal cannula with the O2.


I lay down again, but before I could really get into a deep sleep I started to hear strange noises coming from Joel. I lay there for awhile in a sleep-stupor wondering what he was doing? As they kept happening, my mind grew more clear and then I decided I better get up to take a look.


I went over and switched on the light (poor Steve). Hmmm. Strange. I think he's having seizures... They are not quite like his "usual" ones, but I grow more and more sure that he's having seizures and they are not stopping. After waiting about 2o minutes, I decided to move Joel kit and caboodle downstairs to try and let Steve get a bit of sleep.


So I haul down the oxygen and the monitor and Joel. I sit on the couch holding him and watching seizure after seizure crawl across his little face. This time it looks a bit like gagging. His eyes are different, like they normally are in a seizure, but this time there is a lot of twitching and strange "blinking," all sorts of subtle and strange little facial movements.


So I hold him and rock him and off and on I cry a little bit. It's just a dunking, but I never know how cold the waters going to get or how long I'm going to be there.

I'm starting to wonder if I should wake Steve to take Joel in to emergency. I decided to try and wait it out. Joel has seizure after seizure, one has barely ended before a new one starts and sometimes they just meld into one another, and this goes on for at least an hour and a half. Maybe much longer, I have no idea for sure how long they were going on before I got up.

The neurologist and nurses have told me to bring Joel in if his seizures last more than half an hour. As you can tell, I am loathe to do so, and ignored this advice. It is one of those troubling things about Joel's condition, this uncertainty about what to do, which advice to follow, when to really bring Joel in.

The neurology doctor has previously refused to give me the rescue meds used to break children out of seizures. Too dangerous for Joel. If I remember the words correctly, they have only about a 50% chance of working. And they can have a nasty side effect, particularly on a child like Joel who doesn't have much tone. They can stop him from breathing, because they relax the muscles so much.

Of course, if Joel's seizures are strong enough, affect his breathing too much, or he just can't break out of them, then taking Joel to the hospital to try the meds is a good idea! But since they are not too crazy about them, neither am I.

My threshold for seizure tolerance had grown quite a bit since I know so many children with this disorder who have had ongoing problems with controlling them. Before all of this, an hour and a half of seizures would have terrified and horrified me. Now they make me sit and cry and worry.

But not enough to trundle Joel over to emerg and risk another lengthy hospital stay when they will quite likely pass on their own, and I doubt there is much they will do in emerg that I am not already doing. Plus, if the seizures are going to make Joel stop breathing the last place I want this to happen in the middle of the night is in our car travelling to the hospital. I'd rather wait at home and call an ambulance if we need it.

We will, of course, look into upping or adding some seizure meds for Joel. But that takes time and can be done as an out patient. That's my thinking. In fact, we have an appointment for Friday to talk to the neurologist and discuss it all with her. I'd like to try and come up with a reasonable plan for these events. Maybe see if I can convince her to give me the rescue meds under the strictest understanding that I'd only administer them if Joel's breathing had already stopped and if an ambulance were underway?

But at 5am in the morning the water is cold. I am chilled and frightened. Is this "just" a dunking? Or is it the sign of something more ominous? And I doubt and second guess my reasoning over my choice of actions the whole time I am watching Joel and shedding silent tears at the damage to his brain that is causing this reaction.

I feel on a razor's edge, balancing everything out. Quality of life vs seeking medical attention vs trying my hardest to help Joel vs understanding all the time that I can't save him. Trying to trust God through it all while wondering if I'm really getting it "right."

I started this blog on Wednesday, and now I'm finishing it on Thursday. (Sometimes I get a lot of interruptions.) Last night was a wonderful night of sleep. We started on CPAP, we ended on CPAP, Joel's oxygen and heart rate were good all night. And no seizures, that I know of. Tomorrow we will discuss it all with the neurologist. I will update you on how that goes.

Until then, thanks for your prayers. My Dad was home last night on an overnight pass. He was very excited about that. Today or tomorrow he'll be discharged. I'm very thankful for that. This doesn't mean that his leukemia is "cured." It is unlikely that any such thing has happened, short of a miracle. But for now he has his remission, which seems like a miracle in itself, and we will rejoice in that for as long as it lasts.