I’m writing from the glitziest possible sunniest most high-tech library I’ve ever seen. I was able to get here simply by walking through miles of tunnels and skyways in the Cleveland Clinic Complex.
It’s been a very intense couple days.
A brief overview of Isaac’s illness this past week:
Last Tuesday (was it only one week ago? Seems a bit longer than that!): he got a fever in the evening.
Weds. :sick all day– fever and cough
Thursday: sick all day– same
Friday: better. Still hacking, but no more fever and seemingly up and around. We went out did things fairly normally.
Saturday: huge relapse: suddenly sicker than ever. On Saturday afternoon while he lay limp and asleep and smoldering, I noticed that he had the signs his doctor told me to watch for when pneumonia is developing. He had a higher fever after a brief cool down; he had labored breathing with some retraction (his little ribs showing with each breath); he had rapid, shallow breathing. I had that horrible "this is not a drill" feeling. I called Nurse on Call and consulted. She said he needed to go to the ER within four hours. As is so often the case, we had dinner plans and tickets to a play, but the evening was rewritten to instead be in the ER with a sick little boy who did not want to be there. "It’s just a little cough!" he kept exclaiming en route, in the hopes of derailing the whole project. At the ER, long story short, they said that he was okay. They said that he has asthma– which our pediatrician had been on the fence about– and a virus, but his blood oxygen was clocking in a 95-96%, meaning quite fine, and after a breathing treatment and some rigamarole they sent us on home.
Sunday: sicker? He didn’t look good to me, but then again since we had been sent home from the ER the night before I had to think that basically– he has a virus, as they say, and it’s just running its course.
Monday: sometimes seemingly okay, up sitting on the couch and eating a popsicle. Other times seemingly really SCARY sick. One point post-Motrin I came in to find him absolutely wringing wet with sweat. At times coughing so much and so continuously that he was having trouble catching his breath. We had an inhaler (he has a history of breathing issues, although the whole asthma piece is still being debated as we speak), which would help these situations. Also at one point we tried the old hot shower trick, which seemed to help a lot. By then we had an appoint the next day (Tuesday– don’t tell me that was yesterday!) with his regular pediatrician, so I figured it would be smart to wait and let him see his own doctor rather than go back to the ER again. Also… I HATE the ER. Who doesn’t. And sitting in the ER for hours (after having gone out in the cold) with all those other sick people, and of course the gunshot wound contingent, is always so miserable. Even for grown-ups. I mention this because it retrospect I should have taken him to the ER on Monday.
Tuesday: (seems a full week ago in my distorted world). His breathing seemed much more labored. His puffer seemed to make less of dent in it. Another thing: over the weekend he was cooking with fever, but firey red in color. Now cooking with fever and WHITE. HIs retraction seemed much worse, not only ribs showing and belly pooching out, but little divet in his collar bone sucking in with each breath. All morning I spent in the calculus of "is it better to go to his doctor at 1:45 or should we go to the ER now?" Wondering where we would get the best care and wondering… wondering… whether this was really getting out of hand. Ben agreed to come with us to the appointment. I described for him my worst-case scenario: we go in, and he needs to be admitted to the hospital. We need to go by ambulance. Of course, I had to add, maybe the doctor would just say "here’s some stronger medication and it will run its course." (Joining us for a routine appointment makes no sense for Ben because his work is probably two hours away from the doctor, and this appt was in the middle of the day.) But in this case– not a routine appt– he came along. THANK GOD.
As we drove out there, I sat in the back seat with Isaac, who was sitting there half-asleep or… should I say semi-concious? In his heavy coat I kept needing to reassure myself that he WAS in fact breathing. Each time one of those blue hospital signs went by I thought, "we should turn here." When we arrived at the doctor’s, his breathing was so constricted that his voice was high-pitched. He sat up and looked around in the waiting room, placidly noticing the toys, but didn’t budge from my lap.
When they brought him into the little room (luckily they were on time that day and we didn’t wait at all!), they did this routine little blood oxygen test. The number– 80– was so low that they thought at first that the machine was malfunctioning. Then they got another machine. Then they tested several of his fingers and toes. 80. 80. 80. When it was clear that this was a real number, people and machines started crowding the room. I started crying and trying haphazardly to explain why we didn’t go to the ER the day before, or earlier that day, or… SOMETHING. His doctor was of course very competent and clear. He didn’t confirm or deny that I should have done something sooner. He just said, "We’re going to treat him very aggressively here, but there’s no way that his numbers are going to get good enough that he can go home today. He needs to be in the hospital. Also, we’re going to have to transport him by ambulance." I called it! But… somehow being right about this was really a hollow victory. I said, "None of this surprises me. I could see that he was really sick."
For these breathing treatments, they put a little oxygen mask on the kid (who screams) and a smoky mist pours out and around and in it. They did four of them (10-15 minutes each) back to back to back to back, while also pumping in oxygen on the full-blast adult setting. His numbers came up, thank god, to a wonderful rosy 92-93. Just where it should be! For a minute I thought "now he’s better and we can go!" Right, but what they need for him to truly "go" is to be able to do that sort of oxygen exchange without it being pumped into him from a tank, or being medicated out of his gourd. He needs to do it with regular air!
So– we got to ride in a real ambulance. It wasn’t as fun, I think, as Isaac had imagined it would be. His transportation team arrived and hooked him up to many monitors and gadgets, as he sat in the center of this web of wires and chords, looking very tiny and very pale, catatonic, shirtless in his jeans. To load him up they swaddled him in blankets and towels.
I got to ride in the ambulance too– but in the front seat. Isaac had to ride the way back with three members of his transporation team, who tinkered with him off and on. Ben followed in the car, impressing the ambulance driver with his close-following skills. ("I can see him back there on the phone, but whatever I do, he does. He’s always right on my tush!")
When we arrived the room was all set up for us, down to the detail of his exact size and brand of pull-ups. Many, many people started working on him, while Ben and I tried to provide some measure of comfort between horrible ordeals. The placing of the IV was especially brutal. He had a triple albuterol dose and started to shake like a leaf– it’s a strong stimulant. Meanwhile, cortizone poured in his IV. Many, many meds… oh… that little body and what’s been put into it.
Last night was not about sleeping. (This is a wonderful hospital in many ways– they let me stay in his room, pushing my twin bed up against his.) It was about breathing. The treatments were supposed to be every two hours, but at that rate, whenever he fell asleep, his blood oxygen would drop down too low and this alarm would start shrieking, and people would scurry in to investigate. At times there was a continuous stream of treatments and people in the room. And at some point, probably around three in the morning, I was told that if he couldn’t get back to every two hours they would have to move him Upstairs to the PICU. The "PICU"– pediatric intensive care– just sent chills through me. I didn’t want him in the PICU! I didn’t want him in the hospital at all, but at least … not the PICU. The doctors tried a last-ditch effort to keep him in regular Peds, and I spent a few miserable hours, holding this miserable, terrified, hyper-stimulated jittery child through double-triple treatments in the hopes of staying out of the PICU.
And it worked. He got so that he wouldn’t set off the alarms between his two hour treatments. He didn’t have to go UPSTAIRS.
Isaac and I got maybe two hours of sleep last night, in 15 minute increments. (In addition to the emotional and physical exhaustion of this experience, I’m also now, of course, quite sick with the very virus that started it all.)
Today has gone better. They’ve been able to gradually space out the treatments to every three hours, and they’ve been able to reduce his oxygen input, while still keeping him in the black on his blood oxygen levels. He’s had some rough moments, but it’s been easier to cope with. He started sleeping, mercifully, this afternoon. Except for being woken up and ambushed frequently, he seems to plan to sleep for a looooong time. (Hence I’m able to come over here to this swanky new library building while Ben minds the sickroom.)
Meanwhile– along with dealing with simply Getting Enough Oxygen Into This Kid, they’ve been working on What Is Causing It?
There’s been some debate. At this moment, pneumonia has been ruled out. Many of the doctor parade say he has asthma and that it’s been triggered (in a big way) by this horrible respiratory virus that Ben had two weeks ago and that has been felling many at his office. However, one very knowledgeable-seeming doctor today (seemingly the team leader) said that he didn’t think it’s technically asthma. He thinks it’s this other thing, very like asthma, called "Reactive Airway Syndrome." We’ll explore this later… maybe for a LONG time to come, as we figure out how to manage it going forward.
It would be a wonderful — and very surprising– thing if we could go home tomorrow. Friday is more like it, but again it all depends on Isaac. He needs to be able to keep good numbers without any oxygen flowing into his little nose (and how many times has he tried to tear that thing off?), and with breathing treatments, just a puffer, that we can do at home. He’s a far cry from being able to do this now, although clearly headed in the right direction and fully out of danger.
A few times today he perked up enough briefly to talk. He dreads anyone coming into the room, of course, and now (when awake) makes a habit of glaring at any newcomer (even just the lady here to pick up our dinner tray) and demanding, "What are YOU here to do?" He’s eaten half an orange popsicle today. He’s watched a few iterations of construction videos and such, familiar territory to focus on in these trying circumstances.
I can’t call people– I’m too exhausted and just thinking about calling any of you to explain this makes me verge on crying. I’ll come over and post when I can and thus spread the word about how he’s doing.
Thoughts and prayers of course are welcome, but there’s not really much else you can do at this point. We’re hanging tough and we hope to have our normal lives back– and our normal BOY back– really soon.