So last night we did something I have been dreading for a couple of weeks now. We went in, Joel and I, and had our sleep study. And funny thing is, it was as bad as I thought, but in a completely different way. Neither of us have recovered, but I'm hoping we soon will. I thought I'd write about what happened in the meantime.
One of the many anxieties I had about the study was the fact that Joel was waking up in the middle of the night and having a few seizures, sometimes a heap of seizures. It didn't seem ideal for a good sleep study, and I was pretty concerned about what the sleep study techs would do if Joel was having seizures for a couple of hours. As in, would they panic, be really stressed out, or phone a bunch of people to rush down and "do something?"
So when he was still having hefty doses of night time seizures the night before, I phoned the sleep lab and I phoned my neurologist. Which was, on the whole, a pretty good strategy, I think. The sleep lab said it would be good to get the seizures caught & recorded. My neurologist spoke to the tech on duty last night and filled her in on the Joel "basics" (so I didn't have too, how nice!). She was all gung ho about the study as a chance to capture the seizure activity as well, so it was all a big go ahead. I thought it might not be too bad after all.
Then we made our first sleep study mistake. We hooked Joel up to all his probes, and there were a lot of them. When Joel is himself, I don't think he'd mind too much. He truly is very laid back when he's feeling well and when I'm around in a strange situation, he usually deals pretty well with it. But yesterday was NOT a good kind of day for him. The last couple days he's been back in "unhappy" mode, and very irritable and touchy.
I thought it would be best to just hook up all the probes and be done with it. I was worried that if we let him fall asleep and then tried to put em on, he'd wake up from it and get really upset. (which he might have done, to be fair to me). But he was really, really upset being awake and WANTING to sleep while they were hooking him up. We let him get much, much, much too upset. More upset than I'd normally let him get at home...
And by the time we were done, he took a long, long time to settle and go to sleep. And his O2 sats were way down, and didn't go back up. I mean, they were the lowest I've ever seen em exception of a bad seizure only and for the longest period ever. They stayed low after we put him on oxygen. And after we moved from 1l. to 2l. And after we tried the CPAP. And added O2 to the CPAP on his normal 1l. prescription. So we bumped it up. Finally his O2 levels started to come up, but very, very slowly. My favorite respirologist (I'm going to call him Dr. Smiley, because that is how I think of him. His real name is Dr. Alsimali, which I have no idea how to spell, and I actually haven't seen him smile too often. But he is so warm and caring, so he's Dr. Smiley to me) was on call last night and he bumped Joel up to 8l of O2, because he said it was taking too long for his sats to go up and it wasn't good for him. So finally, finally his O2 level came up to a normal level, though even at 8l. it took a crazy amount of time. (Like 10 or 15 mins. instead of the usual INSTANTLY)
It was a pretty sucky way to start a sleep study. I'm not sure the exact time, but I think it was about 11pm by the time it all got sorted, and already I felt I'd had enough stress and excitement to last for the rest of the sleep study.
This had NEVER happened to Joel before, though like I said, I try really hard to never let Joel get too upset for exactly the reason that I'm afraid his heart will beat out of his chest, he'll burst a blood vessel, or have a dooozy of a seizure or something. Mommy intuition says "Complete meltdown = not good."
The middle of the sleep study is probably the only good thing that came out of it all. Well, something besides the confirmation that complete meltdown = not good. I don't know what time it was that I finally fell asleep, but I know it was just before 2:30am that I woke up thinking Joel was now awake and knowing the signs that he was about to start up his seizure activities. I looked him over, sure enough, eyes open, exhaling through mouth, and even making very tiny, slight sounds. Imagine my complete surprise when the tech (spelt Guiliana?? but said Juliana) assured me that Joel was STILL SLEEPING. I must have asked her the whole variety of "Are you sure? Is he still sleeping now? So even right now he is still sleeping?" until she wanted to pull her degree off the wall and shove it in my face, but each time, yes, he was still technically sleeping. Though she said it was a much "lighter" phase of sleep.
And even though he started to have a series of seizures, she told me he remained asleep through the whole sleep study, right until morning. So, now I know several important things about that. 1. It is ok to leave him on CPAP during the seizures as long as his O2 is good.
2. He is perhaps not distressed because he is not even awake and aware of what is happening.
3. If he's ok on CPAP for O2, and he's not distressed, not even AWAKE, perhaps it is ok for me to try and go back to sleep, or at least lie there dozing and not get out of bed and pick him up.
Which is sort of good and useful knowledge to have.
Strange thing, which I'll have to ask the neurologist about, is that he doesn't enter that "light" state of sleep unless a seizure is going to happen.
Back to the Horror Show Sleep Study. So, I still couldn't sleep after I woke up and heard him having his seizures and etc, so I got up and went to read a book for awhile, just asking them to get me if he did wake up. By 4am I thought it might be safe to go back to sleep and he did seem to have finished the seizures.
Again, not sure what time I fell back to sleep, but of course I was awakened just before 6am so they could remove the probes. Only to discover that Joel had a fever (39.5) and that he was now breathing pretty heavy, though his sats were ok. GREAT!
The tech (I'm just going to call her Julie!) asked me if I wanted her to call Dr. Smiley to get Joel into the ER and I briefly contemplated it before chucking the idea out the window. His lungs were good last night at 11pm when they checked him, and I know that the combo of seizures, and dehydration due to all the crying and unhappiness last night could have easily brought on the fever, not to mention Joel gets "safe" fevers all the time. But his breathing made me a bit uneasy. Still, we go to the ER unless I really think we need to. You are there forever. Like the Hotel California, and do I need to say more??
So we've come home, and Joel's fever is down. I got him on O2 because his breathing is so heavy and his heart rate is a bit high, considering he is asleep. I'm really hoping that after he rests and recovers from his sleep study torture, I mean, experience, he'll relax and breath easier. If doing the sleep study has upset the fragile equilibrium we maintain, and sends us to the emerg, then it really wasn't worth it.
And I know one thing. I'm not doing another one. So I hope they don't try and tell me that the fever indicates that Joel was sick and therefore we need another one. I'm hoping that since we ended up using the CPAP, they are not going to say that the study is now in the "therapeutic" category, not the "diagnostic" (because Dr. Smiley had the decency to warn me that even though we needed to do it, it technically shifted the study) and now we need to do another sleep study.
I'm not putting Joel through that to prove to them (the heads of the department, not Dr. Smiley) something that I already know: the CPAP has been helpful to Joel. I really HATE putting him through that sort of stuff, because it seems to take a much greater toll on him then all that medical stuff takes out of a healthy child. Julie said that if we did another sleep study, we'd let Joel get to sleep first and then hook him up. That might work better, it might not. But I'm loathe to put it to the test.
On a side note: I thought that Julie must really think I was a pretty horrid mom. Let's just say that my personality is NOT at it's best when I'm stressed out and dealing with some medical procedure. I get all stiff, awkward, and jerky when they ask me what they think are simple questions about Joel, and my explanation is full of sighs, rambling, lengthy and maybe even confusing. My attempts to lighten the mood with humor fall flat and just seem stupid. Yeah, I don't suppose I'd get a Miss Congeniality on a night like last night. And then there is me NOT taking Joel to emerg, plus giving him a dose of morphine in the morning with a guilty and rambly explanation that I think the car seat is stressful and maybe even painful and I just don't want to risk him having a meltdown like last night on the drive home. So, not exactly making a good impression. (In my experience, giving Joel morphine never leaves a good impression)
But she completely surprises me as I am about to leave. She comes to shake my hand and "I can't believe I didn't even get your name until now." Then she says if we end up back in hospital later today or any other time, call the sleep lab and we'll go out to coffee. She says she'd be happy to take me out for a break sometime if I'm in the hospital and needing to get away for a bit and chat. I suppose it might seem odd or strange in the light of what we normally consider "professional" in this setting. I just thought it was really nice, a caring sort of thing to do. I'm glad she dropped her distance for a minute to take the time to reach out. I might even take her up on that offer...
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