I’m too tired to tell much of what has been happening. We just got home a couple hours ago. Talk about a good time for a lap top. yesterday I would have posted but the hike through miles of uncharted tunnels and skyways was too much for me. (They had a hook-up right in the room, but if you needed a computer had to go the space-station looking medical research library part of the complex.) I’m sick and coughing up green slime, weary to the very marrow.
Isaac is pale and weak and looking like he shrank about two clothing sizes. He looks quite the Dickensian waif, hallow cheeks and dark circles. One of the BEST aspects of being home (and everything about being home is sheer wonder and glory) is the freedom to SLEEP. Hospitals are horrible at letting people sleep. It’s not just that they check your vital signs all the time, or that they come to give medication at all hours, it’s that they all do it separately, each person on his/her own path. So while each separate thing may be on a reasonable schedule, from the patient’s perspective your room is Grand Central Station. My worst moment of this kind: On Weds morning after a truly hellish night, isaac had his 6 a.m. breathing treatment (AKA torture by mist for 20 minutes) and was hysterically screaming throughout. Then, I finally got him calmed down. The room was dark and quiet and he slipped into sleep. I started nodding off. Then suddenly the room was flooded with light. Someone marched in and announced loudly: “I NEED BLOOD!” (no “my name is so and so and I’m sorry to wake you but…”) I said, “What?? Now??” She said, “Yeah.” I said, “Just a finger stick? Or can you take it from his IV?” She said (dismissively), “No– I need the arm.” So I had to unwind the once calm and peaceful boy, expose his tender inner elbow to this vampire and let her stick him, as he screamed so much that his eyes rolled back into his head. In normal life a blood draw would leave him a nervous wreck for the rest of the day.
This sort of thing goes on all the time there. Last night I BEGGED them to just do his vitals when the RT was already there doing his breathing treatment. Just please do it at the same time! They seemed to think this was a novel idea, but they did do it. So at 2:00 a.m. there was an ambush, totally alarming, but at least then there also was a lull for a couple hours before the next person came and did the next thing. (Isaac, too, pleaded with them: “I just want to sleep!”)
He slept all night without oxygen supplementation. The first few hours his numbers dropped such that Ben and I (Ben stayed until 10 or so and they didn’t kick him out) sat there watching this little blue screen with alert intensity of interest. 91. 91. 89. 88. 87. 89. etc. You would think it was the most rivetting program ever created. We really didn’t want the little tube thing back in his nose. Although his numbers weren’t great, though, he himself looked good, calm, not retracting, breathing slowly and well. So they decided to let him try it on his own and after a while they levels came back up where they should be.
Today when we were being checked out Ben asked at what number would a kid actually pass out from oxygen deprivation. The doctor said he didn’t have a number like that, but that 80 was incredibly low. He said, ‘Basically that means there was no air being exchanged at all. It means that carbon dioxide was building up in his body and there was no way for much oxygen to get in. It means that he was this close to being admitted directly to intensive care– and intubated– and he almost ended up there anyway. 80 is a real scary number– let’s put it that way.”
It’s sort of hard to conceptualize because 80% on a test or something isn’t all that horrible. It’s a low B, maybe, but not an F. I think what they’re saying is that in terms of breathing it’s a D-.
In the hospital room the alarm went off when he hit 88 or less, although last night they accepted 85 because they were trying to let him get his sea legs with no oxygen in his nose.
You know, the whole weekend and days leading up to this ordeal my fear was pneumonia. For me, it was all about pneumonia. Since we didn’t know he had asthma (and still there’s this nuance about the reactive airway disease, but I think as laypeople we should just understand it as asthma and leave it at that for now– also whatever you wanna call it we can all agree it’s f—ing dangerous stuff). I read this article recently (like an idiot) about this woman who had a little three-and-a-half-year-old boy who died of pneumonia. And no, it wasn’t in 1910. And no, she didn’t live in a third world country. I mean, now. Like a year ago, in an American city brimming with modern medicine. When Isaac was sick around Christmastime, the threat then was pneumonia. And the way you react to pneumonia and the way you think about pneumonia is a totally different mindset than asthma. With pneumonia, progression is counted in days. With asthma it can be about minutes. Asthma just wasn’t on my radar screen, and when they said he had it at the ER the other night, I just thought they were wrong, and they didn’t know my kid, and that he needed to see his own doctor. Also, of course, they said that he had asthma in the same breath as saying, “he’s fine– go home.” They didn’t add an air of urgency or concern to the situation at all. I wish they had– I wish they had given me a lecture of some kind about, “IF thus and so happens, or if you see this, you need to get this kid in here immediately.” They just said, “Okay– have a nice night!”
I keep thinking about all this, of course, because I keep asking myself why we didn’t go the ER sooner and how in fact it got to be such a a crisis. (Ben tells me to stop doing this, and that we got great care, and that hindsight is 20/20, etc.) I guess on Sunday we were just at the ER the night before, and then on Monday we had an appt with his regular doctor the next day. It seemed so reasonable that he would be sick as a dog and sleeping his way through it. Also the ER is so horrible, and it’s sort of weirdly humbling to go there when it’s not really an emergency. I was chastened by being so worried and being sent home so perfunctorily (is that a word?). It made me feel like an overreacting ninny and I suppose some part of me was afraid of being in that position again.
However… now all bets are off. I can’t take the kid to the ER every time he has a sniffle, but now I do know how serious it can get. My friend tells me also that asthma doesn’t have to wait long at the ER. Asthma gets to the front of the line, which is good to know.
Anyway– what a week.
Our e-mail (conveniently) has chosen this moment to crash. I think it has a virus, ugh. I also think that I may be able to access it another way. But if you’ve been sending me e-mails I haven’t gotten them yet.
Can we review how good it is to be home? Isaac is wrapped in a towel (how sad it was to take off his clothes and find all the electrodes still glued on his little chest and all the band-aids here and there from all the needles sticks), under a blanket, asleep in his favorite spot on the couch. I think I’m going to go join him!