And part of me wants to never think about it again.
Basically, we survived through gritting our teeth and reassuring ourselves (and him) that IT WOULD END. Because it's hard to remember that when you're in pain, even for us grown-ups. And we gave Motrin. Lots and lots of Motrin. So much that we had to write it down. We had a very sophisticated tracking system.
Post-its on the bathroom mirror, January 2012
That's how much Motrin Elan had over the course of his 12 days of awfulness. We threw a little Tylenol and Tylenol with codeine into the mix some days, but in general, he didn't like the taste of these (I've heard the codeine feels burning on the raw throat), so he would scream and refuse and we would have to hold him down, one of us pinning his arms, one of us holding his head, shoot the medicine into the side-back of his throat, and pinch his nose until he had no choice but to swallow. Now THAT'S fun for the whole family!
Unfortunately, we had to force him to take his Motrin sometimes too, especially in the night and early morning, when he would not willingly swallow anything. And if we slacked off, the pain would get worse, and the resistance would get worse, and the screaming would get worse.... You get the idea.
Sometime in the middle of the chaos - I can't even remember which day it was because they all blend together in my mind - I called the ENT, who didn't call me back very quickly, and I went into hysterical mom mode and called my pediatrician, and said something like "I'm not usually a hysterical mom but I'm getting kind of hysterical right now." My pediatrician then called the ENT, who called me back and said, "Everything you're describing is normal. Really." And then she gave me a few tricks, like how to squirt the medicine in so that he can't just shoot it out all over you and the bed with his tongue (holding the nose and squirting deep into the throat are the key). She told me it was fine to hold him down to give him the medicine, that I was doing what's best for him, even though it felt rather like waterboarding my own child. She reassured me that his gurgling cough wouldn't make the scabs come off too soon and have him bleed and then we'd be back having emergency cauterization of the wounds and have to go through all this again. Basically, she reassured me. My father is a pediatrician, and I was in constant communication with him on the phone even after he left 3 days post-op. And even with that support, I needed more reassurance.
I had heard from many parents that Day 10 was the turn-around point for their kids, so I was hoping that would be the case for us. On Day 9, I wrote an email to another mom saying, "It just seems to keep getting worse" and she said she could have written the same email on Day 9 of her child's recovery. So that gave me hope.
On Days 10 and 11, Elan was still deeply entrenched in funk. He was obviously still in pain, but even more than that, he just seemed so incredibly out of sorts - frustrated and exhausted, he had no interest in seeing friends or playing. We were all in a very bad mood.
On Day 12, I forced him to go to school. He didn't want to go, which is very unlike him, so I told him he didn't have to stay long, but he did have to go. And he went, and he smiled, and he stayed. That week was still really rough, but at least he was remembering who he is, that he has friends, and that life is basically good. Mikhail had to go out of town for work, so my mother-in-law came to help me since Elan was still up a fair amount at night.
At 3 weeks post-op, his throat was pretty much completely healed, but he got a cold. Which did not help with the recovery, the fussiness, or the sleep.
At 3.5 weeks post-op, I hit a wall of exhaustion and hopelessness. I had been sleeping in Elan's room for 5 out of the previous 6 nights, and he was so restless in his sleep that his frequent rolling around and half-moans were keeping me up even when he wasn't completely awake and crying. (For the first 2 weeks, we had Elan sleeping on a sleeping pad in our bedroom, we call it his "nest.") I knew that I should give it more time, but I was really feeling like the surgery hadn't worked. Mikhail and I had decided that we wouldn't make any real assessments until March. We knew that Elan's sleep problems were not cut-and-dry, that he had behavioral issues as well as the sleep apnea, that the apnea itself wasn't obvious or easy to assess without a bunch of wires attached to our child and machines. And yet, I went there. I made pronouncements. I felt hopeless. We always knew it was possible the surgery wouldn't work, but of course I didn't want to believe that was the case, after all we had just gone through! So I put Mikhail in charge of nights, and got some sleep, and felt a little more human again, despite getting the kids' cold.
And then something happened. Mikhail and I started sleeping in our bedroom. Elan started sleeping in his room. (Emry kept sleeping in the tiny port-a-crib in the office, poor baby.) Elan started sleeping THROUGH THE NIGHT. And now he's slept well for about a week. He's still a little crabby in the morning, but he's not screaming and carrying on for an hour every morning like he was a week or two ago.
In the park, February 2012
Is it possible? Could it really be working?
I've realized I'm afraid to talk about Elan's sleep when it's going well. I'm afraid I'm going to jinx it. Like I should channel my Eastern European ancestors and spit over my shoulder while I acknowledge it: Elan slept through the night last night -- puh, puh!
But I've also realized that I need to acknowledge it when things go well, too. Otherwise, I'm only talking about the negative. I risk seeming like, and possibly becoming, a very pessimistic person. And when there's a positive development, even though I fear it won't stick, that it's just a blip of good sleep in the sea of wakefulness, I need to share it. I want to shout it from the rooftops: ELAN HAS SLEPT THROUGH THE NIGHT FIVE OUT OF THE LAST SIX NIGHTS! Maybe I'm more of an optimist than I sometimes fear.