April 10, 2008 by Marj Hatzell
One never appreciates sleep until one is sleep deprived. To prove that, think of having a newborn. Remember all of those Saturday mornings you slept in late? Had breakfast at eleven? Stayed up too late watching television but were able to sleep later in the morning or take a nap when you felt like it? Yeah, me neither. It’s almost like someone else was living that life and I was watching it from the outside. I honestly cannot remember what my life was like before children. Not complaining, really. I wouldn’t trade it for a thing. I just think sometimes we have NO IDEA what we are getting ourselves in for.
Typically, newborns eventually develop some sort of sleep pattern. Sometimes they come home from the hospital sleeping eight hours at a clip (Bugaboo) and sometimes they wake up every two hours to taunt you and scream and vomit and turn you into zombies (Bug Boy). At some point, most kids do learn to sleep (Bugaboo) while others continue to wake up well into their third year (Bug Boys). Occasionally, even children who once slept begin waking frequently at night in their second year (Bugaboo) and have screaming fits and tantrums and night terrors (Bugaboo and Bug Boy). Except they aren’t night terrors. They are seizures. Only, you don’t know it because while they are giving you homemade facial dermabrasion with their stubby fingernails, all y’all are thinking about is booting them out the door or locking them in their rooms so you can take a nap.
From Bugaboo’s second year to his third-and-a-half, he had these awful night terrors and sleep issues. We had no freaking clue what was going on. We knew that our kids woke frequently and we spent and obscene amount of moolah on top-of-the-line mattresses so that we were comfortable when they woke up in the middle of the night. I’m at the point that when I wake up and one of them hasn’t been up at three am, it is a good day. My kids have sleep issues. Tons of them. We’ve been to every specialist under the sun for the past two years. They were having night terrors because of seizure activity. Somehow these boys weren’t getting enough oxygen to their brains.
This fall we did a sleep study with Bug Boy. Apparently, he does not get enough sleep (NO DUH) and is cranky and tired and irritable and jittery all day. The study showed that he was rebreathing too much carbon dioxide, or just not expelling it properly. They blamed it on a med he was taking at the time (for seizures) so we changed things around, took him off of the med and they asked us to repeat the sleep study. Last night we completed it. The difference this time was that his CO2 levels would be very carefully monitored. If it went above the magic number of 55, an alarm would go off and we’d have to wake him. Within fifteen minutes of him sleeping it was 60. We woke him, he went back to sleep and it went off shortly thereafter at 62. Danger! DANGER! Then the C-pap machine came out and he was NOT a happy camper. But guess what? His sats went right down to 38 and stayed there as long as the C-pap was on. Twice in the middle of the night he tried to remove it in his sleep (mumbling about the thing he had to do, the thing, he had to get it done!) and his CO2 climbed back up again. As soon as it was replaced, it went right back down.
What does this mean? Well, for starters, I HAVEN’T SLEPT IN DAYS. Bugaboo has been waking up due to the cold-that-won’t-go-away and then last night we had the sleep study, which means I was up EVERY HOUR from 10 to 6, sleeping on a makeshift convertible recliner-bed thingy that was seriously barely wide enough for my hips and feet. Baaaaaad sleep. Also? We have to go back to the pulmonary clinic to find out our next step. It looks like Bug Boy will end up on C-pap indefinitely. And they want to do this study on Bugaboo to find out if it is also affecting him. It could be that Bug Boy’s Chiari Malformation is causing it, although his is considered so minor at five millimeters they doubt it. It could just be a total fluke. Lucky us. But Bugaboo? I mean, do you know how they hook people up for a sleep study? We barely made it through the EEG, he was ripping out leads with hair attached. No lie. Now they want to hook up leads to his head, tape them to his face and neck, tape them to his legs, lungs and heart, wrap his head like a mummy, attached a breathing sensor and oxygen tube to his nose and make him sleep for eight hours in a hospital bed? Ummmm…I dunno. And, if we survive that (doubtful) he probably won’t want to keep the c-pap machine on his face. Sheesh. This is gonna be fun, huh?