Here’s my NYT article

Part of it, anyway.

In answer to your question: Yes. I saw it. I know about the nice big article about pediatric stroke on the front page of today’s Science Times. My dear friend Some Guy alerted me to it last night, and as of 8:30 this morning, three people had emailed me the link; since then, one more person has (my client, as a matter of fact, which was very nice, as well as reassuring, because I thought he might hate me for being such an OCD pedantic loon, but this suggested he doesn’t. Woohoo!). I very much appreciate people emailing me the article; I glanced at it, but I haven’t read it. I’ve been told I won’t learn anything new from it, except for this one family’s story, which is always of interest, but I’m reliving enough memories just from the quick glance I took, thank you very much. Shudder. From what I saw, there are a lot of similarities (Dr. SuperStroke is even mentioned!), though G told me this kid’s case was much, much worse (shudder) (though thank God, R’s experience was so miraculous that it doesn’t take much for a case to be “worse”…). He also told me that among other places, this family apparently took their kid to San Francisco; we also thought at one point that we were going to need to take R there, but then we found out about the SuperStroke program, which is much closer to us. That was a good thing, since I was in San Francisco once with G about 10 years ago, and I think I’m still carsick. Heh. Not in a hurry to get back.

Anyway, in addition to other things, the article’s mere existence, and the few paragraphs I saw, has caused a series of flashbacks to come crashing over my head at full velocity. Not fun. Between you and me, I’ve spent quite enough time in tears, or on the verge of tears, or exploding in fury at random (and not so random) people and things, or trying to make chicken soup while I’m waiting to find out if my daughter will ever talk again, etc., as a result of this subject. But since my peeking at the article has made me somewhat relive the fun adventures of July 6-7, 2009, I thought hey, maybe everyone else also wants to relive them! Or live them, rather, because it will be your first time.

So here’s what we’re going to do. Ready? I started writing a bunch of stuff while the July nightmare was happening, but I never finished. Then, this past November, around the anniversary of the Psycho Evil Pneumonia From Hell, I started writing an anniversary post, but I never finished that, either – and, as part of THAT post, I pasted in my unfinished stroke writings! So now, I’m going to paste into THIS post the relevant portion of the pneumonia anniversary post, which CONTAINS the stroke stuff that I never finished. Follow?

So I’m going to paste it in after one of those nifty “more” tags, because it might scare the pants off you, and this way, only those who really want to get the pants scared off them will be likely to see it. But before you click on “read the rest of this entry” or whatever, consider yourself warned: it’s vivid, and raw. And remember – the first two paragraphs and the last four paragraphs were written in November (2 months ago), and the rest was written in July (6 months ago) (speaking of which, R’s TIA took place the day after the 6-month anniversary of the stroke. Nice). Capiche? Good. Here you are.

After the stroke, when I was staying with her in the hospital, I started writing what I thought would be a blog post, but I didn’t finish it. It was a new experience for me, staying in the hospital; G stayed with her every night during the Psycho Evil Pneumonia From Hell, because I had a nursing baby at the time, so I couldn’t be away overnight. But I stayed with her after the stroke, and I started writing a flood of things. I wish I’d finished. Each moment and each step of everything was still fresh in my mind, and the SuperStroke team wants to know all the details. “How long was it before she regained movement in her right side?” I don’t know; maybe half an hour? Ten minutes? Four days? I wish I knew. “How long was it between when she stumbled at the kitchen table until she lost movement in her right arm?” I don’t know. Other questions I didn’t have answers to. I wish I’d finished writing the flood.

Want to see what I wrote? I think I’ll paste the whole thing in here. This was written over the course of a few days, last July. I warn you: it’s really, really long, and there’s a lot more afterwards [ed. note: the "lot more afterwards" is still in the November draft. It's not here].

Here’s the moral of the story: Never try to plan anything fun.

When R was hospitalized last November, I was in the middle of attempting to plan a wild whirlwind excursion to London to celebrate my mother’s 60th birthday. I’d been negotiating with various siblings, ignoring my mother’s giggly protest-too-much about how we weren’t going, discussing with my baby siSter how we were going to survive without nursing our babies, acquiring donations of airline miles from generous friends, etc.

Not only that, but R was hospitalized on Friday, November 14, and the following Shabbos – November 22 – my BFFZ was supposed to come with her family. We NEVER see each other, on account of her living elsewhere. We’d been planning this since I don’t know, August? May? That’s how BFFZ is, see. She plans everything approximately 8 months in advance, and she tries to force the rest of us to do the same.

So that’s what was happening just before R developed Pneumonia From Hell. Plans. Fun. All sorts of plans for all sorts of fun.

Next thing I knew, her whole body was on fire, she couldn’t stand or sit up, she was struggling to breathe and groaning audibly from the effort, and I was learning all kinds of new words. “Pleural cavity.” Know what that is? It’s the space around your lung. And when your lung is chock full of disgusting horrible bacteria-infested crap, your pleural cavity can also become chock full of disgusting horrible bacteria-infested crap. “Loculated.” Know what that is? It’s what happens when there’s a whole bunch of horrible bacteria-infested crap that sort of constructs little membranes for itself that keeps it from draining out the chest tube that your daughter has had inserted for a week already. (Was it a week? Or just a few days? Who remembers.) “Speciated.” Know what that is? It’s when they figure out precisely what type of evil monsters have set up shop in your daughter’s various body parts. “When it’s further speciated we’ll be able to tailor the treatment more specifically. In the meantime we’re giving her three broad-spectrum antibiotics.” By IV, of course. Swell.

“Pericardium.” Know what that is? It’s the sac around your heart. Know how your heart and lungs are right next to each other? So when your lungs are full of yadda yadda infested crap, it can also attack your heart. It’s rare, of course. They made that super-duper clear. “Gosh, this is rare!” “This sure is rare!” “It’s very rare for this to happen.” I get it. It’s rare.

Know what a pericardial effusion is? It’s when there’s fluid inside your pericardium. (P.S.: There isn’t supposed to be fluid inside your pericardium.) Know what happens when your daughter’s pericardium has fluid in it, in addition to all the psycho-bizarre thick crap that’s in her pleural cavity, but the doctors don’t realize it, because none of the seven million x-rays they’ve done show it? Her fever spikes to 104, and before you know it she’s the subject of grand rounds, and all the fancy doctors view the x-rays and say “No, silly, there IS still fluid in the pleural cavity! Do another CT scan!” So they do, and that’s when you hear about pericardial effusions. “Pericarditis.” That’s the other term for what she had. Inflammation of the pericardium.

Know what a pericardiocentesis is? That’s when they poke a cute little tube into her pericardium so they can drain out the fluid. They do this in her shiny new room in the PICU, where they moved her once they found out about the pericarditis. “It could interfere with her heart’s functioning,” they told us. “It isn’t right now, but it could, and they’ll be much better equipped to deal with it up there.” So they moved her to the PICU.  Not just any PICU, mind you; the cardiac PICU. How amazingly lucky we were, by the way. Can you imagine a better place for her to have been? The pediatric cardiac ICU at one of the best children’s hospitals in the world. I fell in love with one of the attending pediatric cardiologists at first sight. Sometimes you just know.

“We may have to intubate,” they told us. “Intubate” wasn’t a new word; I’d already learned it from ER. The TV show, that is. Also Scrubs. But ER first.

They didn’t have to intubate. In spite of her being able to use only the one lung, she managed to breathe on her own throughout the procedure. And they got all the fluid out, so they didn’t have to do anything like slice her heart open and sop it up with a dishrag.

Then I learned two more words: Echocardiogram (“echo” for short), and TPA, though that’s more of an abbreviation than a word, per se. An echocardiogram is when they do a sonogram of your heart. “That’s not the first time I’ve seen her heart beating on one of those screens,” I told G. It looked a lot bigger this time. Four nice big chambers, squeezing, in and out, in and out. And “TPA” is this stuff they use for (ironically) stroke victims, to thin out the blood. I don’t know what it stands for (don’t care, either). In R’s case they shot it into the chest tube, and it went into the pleural cavity and broke up the loculations (remember loculations?), so lots more ooey gooey crap came gushing smoothly out. The medical people gushed too. “The TPA is working great!” I agreed. It was the greatest-working TPA I’d ever seen injected into a pleural cavity, myself.

Ah, memories. Ah, vocabulary.

So I wasn’t planning any overseas adventures or birthday celebrations this time. No; this time, I was just supposed to be having a Take II of our attempt to have our friends visit. You know, the friends who got stuck in traffic and didn’t make it for Mother’s Day Shabbos. I don’t think they’re ever going to try to visit again. Heh. We were also going to have a super-fun barbecue on Sunday, which happened to have been one of the most beautiful days we’ve had. Also, I was supposed to be meeting with client #1, on Tuesday, and oddly, I’d been enjoying that work a lot more than I was at first, and I was looking forward to the meeting and to moving to the next phase of the project. Plus I got a lot of work to do for Client #2. I did some of it on Monday, and it was actually sort of fun.  Plus there was Something Else I was going to be doing on Tuesday. Remember that? Remember how I said I didn’t want to say what it was, because I didn’t want to jinx it?

NOTE TO GOD: OK. I GET IT. NEXT TIME I DON’T WANT TO JINX SOMETHING, I WILL NOT EVEN SAY THAT I DON’T WANT TO SAY WHAT IT IS. I WILL NOT SAY ANYTHING AT ALL. I WILL PRETEND WHATEVER IT IS DOES NOT EXIST.

Then there was more good fun stuff scheduled for Wednesday. Remember? The job interview, for the job I may not hate? Plus I was supposed to eat banana muffins for breakfast with TBS. Plus I was supposed to do the Sisterhood mailing, which wasn’t necessarily going to be fun in itself, but it was my chance to show President Miriam (not me) that I do in fact know how to stuff envelopes, so she doesn’t have to do the flipping thing herself every flipping time (AHEM). Plus the pool is finally set up; plus it’s summer and summer is fun; plus, plus, plus. Fun. Lots of good fun things.

So first, on Monday evening, G was out in the backyard with R and RS and the Boy, just when they’d gotten home from camp. I’d driven them home, and I’d taken the Boy with us so G could get some work done, and the Boy exhibited his cooperative team spirit by yelping for the entire (45 minute) ride home. After suffering through that, I was in no mood to be with the Boy any longer. R and RS wanted to swim in our pool, so G took them and the Boy outside.

So at around 5:00 PM, R suddenly started shouting that her eye hurt. Her left eye. G couldn’t see anything on it; he thought maybe it was a bee sting. She was crying and whimpering and not listening to G. Finally he coaxed her inside so he could look at it more closely. I looked at it too. Didn’t see anything; maybe a little irritation around the eye, but that could have been from rubbing it. So I was thinking maybe a bug bite, maybe something she’s allergic to.

Then she started acting strangely. She wouldn’t listen to us; wouldn’t answer our questions; just acting strangely. When you know a person, you know when they aren’t there. You know when something or somebody else is wearing their body, or when their body is just wearing itself, with nothing inside. But we didn’t really know it yet. Didn’t realize what we were seeing. Though I believe I heard the distant tinkle of an alarm bell. It’s so hard to tell in hindsight, you know?

So first I nurtured and soothed. Didn’t work. Then I got firm. That didn’t work either. Then I threatened. That didn’t work either. I thought perhaps she was being defiant, so when threatening didn’t work, the alarm bell became more persistent. She ignored me – and then she fell deeply asleep on the couch. That’s when the alarm bells pushed themselves to the front of my perceptions. This is not defiance. This is not right. Something is not right.

G said we should call YR, my brother-in-law the neurologist. Maybe he would take a look at her on his way home from work. I knew something wasn’t right, but I was still thinking bug bite, but that perhaps it was a bug to which she was allergic. But when G suggested calling YR, it hit me. It took me a minute or so, but it hit me. Neurologist. Of course. Holy God in heaven, these are neurological symptoms. I looked at her on the couch. She was sleeping deeply. I said her name; she didn’t budge.

“Call YR,” I said to G. “Call him right now.”

Did I “know?” I think I did. I knew something. I don’t know what I knew, but I knew. And of course, there’s such a thing as knowing without knowing. Though I used the word “stroke” dozens of times between Tuesday morning and today (Thursday), I still don’t think I really “knew” until around 11 AM today that she’d had a stroke. I knew. But I didn’t know.

We called YR. “Take her to the ER.” We did. In the car she said she was nauseous. More neurological symptoms. She didn’t throw up. She walked in to the ER, holding my hand. She was back in her body, but something was still wrong.

Triage. “This happened all of a sudden, or she hit her head?” “All of a sudden,” I said. I’ve seen enough ER episodes. I know enough just from general knowledge. I know what will happen next. They’re going to take her right away.

They did. Height. Weight. History. Charts. Signatures. Do a scan. Do a damn cat scan. The pediatric ER at good old Columbia Presbyterian. G had been there twice with her; I hadn’t been there since RS was six weeks old and she had a fever and we had to do one of those annoying spinal tap blood tests to rule out whatever. Still crowded, still horrible. Babies crying, bad things everywhere. A kid came in with his hand elaborately bandaged. “I have a kid here with his finger hanging off,” called the paramedic. Nice.

We went into a room inside the ER – with a door. “Wow,” said G. I agreed. I’m not sure why we were deemed special enough for a room, when there were beds with sick babies in them scattered randomly all over the floor. R laid down. We waited. She fell asleep again. A doctor came and examined her; she vomited all over him and herself and the bed. He said he’d get someone to clean it up. G and I gave each other cynical looks. Yeah, right, he’d get someone to clean it up. Who could he possibly get? Everyone was running around doing a million things. We know hospitals well enough to know that no one was going to come. Feeling perfectly at home, we cleaned it up ourselves. R was still wearing her bathing suit under her clothes. We took off her shirt. I looked around the room for alcohol pads. G found some in a cabinet. It’s amazing, the way our comfort level with hospitals was affected by the last R nightmare. There was a time when I would have been afraid to move a chair from one bedside to another in a hospital, and there I was, making myself at home, stripping beds and opening drawers. G found her a gown. It came down to her toes. Um, hello? Is this the pediatric ER, or what?

Another doctor came. We woke R up. He checked her. And she was completely back to herself. He checked her some more. The pediatric neurologist came and checked her some more. I’ve seen these exams before; even had some of them done on myself. They went on and on. She passed them all with flying colors. She appeared fine. Both doctors recommended against doing a scan. “Whatever happened seems to have self-corrected, and these scans release a lot of radiation.” “Self-corrected;” there’s another phrase I can’t say I’ve used much. Vocabulary continues to build.

We discussed it and they left it up to us. G and I agreed; no scan. She had enough radiation during the six-week nightmare, thank you very much. Daily x-rays, sometimes twice daily. Two scans. Yes, thank you; we’re not looking for additional cancer rays. She’s only six years old, for God’s sake.

Six years old. She’s only six years old.

We got ready to leave. The diagnosis they gave us is “atypical migraine.” Ha. That pretty much means “something neurological happened but we have no idea what.” The neurologist essentially admitted that’s what it means. As we walked out I gave myself a stern talk. In my head, I mean. Not out loud.

Now you remember. You had all the information when you decided not to do the scan. They made a clinical judgment, and you made a decision. It was a reasonable decision. If something turns out to really be wrong, you will not kick yourself.

Myself agreed with me. “No, I won’t.”

Myself and I were grimly satisfied, but I think myself and I knew. We knew. This isn’t over. I’d said it to G. I won’t repeat exactly what I said. If I do, even in writing, I might throw up. [Ed. note: I don't remember what I said.] I’m going to throw up anyway, if this is ever over. Maybe before it’s over. Though of course it isn’t ever going to be over. The pneumonia and the pericarditis aren’t over, and they’ve been over since she had the PICC line taken out on December 16. Watching your child fighting to breathe, groaning loudly, her whole torso heaving up and down; watching her become so weak that she can’t stand up, or sit up, or talk, or move her arms; thinking you’re just bringing her to the cheesy little local hospital for an x-ray to confirm a diagnosis, having been told that there’s a 60% chance of her being admitted, and then being told that her entire left lung is blocked and hearing phrases like “high risk” and “extremely sick” and “dangerous” and “severe” and being told she has to be transferred to the super duper fancy shmancy pediatric hospital – “we’re not equipped for kids that are this sick” – and seeing the doctors and nurses at that hospital looking terrified and so uncomfortable and desperate to get rid of her – well, it may be over, but it isn’t over. That feeling of sitting there that Friday night while we waited for the transfer, staring at her torso heaving up and down, her cheeks on fire, her eyes closed, as the full weight of the situation came crashing down on me and I fought back tears and howls of terror – well, it won’t be over. I’ll never forget that night. I’ll never forget those weeks. Never. Never, ever, ever. Even if I have a stroke myself. No stroke could blot that memory out of my mind.

And now. Now. The new nightmare. My daughter had a stroke. She had a stroke before she started second grade. That is not something that will ever be over.

We went home. We went home Monday night, and we went to sleep. She came bounding into my bed in the morning, at about 8:00. We were all so tired, we took it really slow. Late morning. “Good morning, Cookie! You feel ok?”

“Uh huh!” came the impish little voice.

“Do you want to go to camp?”

“No. No camp.” I was glad, actually; not only because she’d been up so late the night before, but because I wanted to keep an eye on her.

I was completely exhausted; I’m not used to staying up like that anymore, and I’d taken one of my numerous body clock-changing drugs before the whole thing happened, which had made me even more tired. [Ed. note: I actually fell asleep next to her on her stretcher while we were waiting. Heh.] G graciously agreed to take the Boy with him to drive the other girls to camp, and R and I promptly fell back to sleep in my bed. I woke up at 10:00; I went downstairs and quickly fired off a few business-related emails. Email to the Secret Thing; let’s reschedule for tomorrow. Email to my client; I’ll be able to make that 12:30 meeting today after all. I’d lost the whole previous evening, so I ate breakfast and quickly started preparing for that meeting. G took the Boy to run some errands, and came home at about 11. R wasn’t downstairs yet.

“G, can you check on R?” I figured she’d be starving. She hadn’t eaten since they served lunch at camp the previous day. G came downstairs. “She was awake,” he said. “She was just lying there awake. She’s going to wash and brush her teeth and come down to eat breakfast.” I was surprised she hadn’t come straight down – not like her at all, especially when she’s hungry. Ten minutes later she hadn’t come down. G went to see where she was. She was sitting in the middle of the steps, just staring. “Don’t you want to come down and eat?” She came down. We poured her cereal. I watched her carefully. I don’t know if my heart was pounding, but those bells were starting to stir again. She didn’t say the bracha on the cereal. Again, not like her at all. I reminded her. I watched her carefully. She said them (she makes two on this cereal), slower than usual. Stammered once. I watched for another second and went back to the living room where the documents for my meeting were printing. “G, can you bring me your stapler?” He left the kitchen and brought me the stapler. He went back to the kitchen. “Miriam, can you come here please and look at this?” I came. She’d spilled half the cereal on herself and was just sitting there.

We said her name. She didn’t respond. Staring. She was gone again. G and I looked at each other. “We need to go to the hospital right now,” G said. I nodded and called her name again. She didn’t exactly look at me but her face turned towards me.

She was smiling with half her face.

I know what that means. I’ve always known what that means.

G tried to help her up. She stumbled. I ran for the phone. I called 911. I said we wanted to go to Columbia; they said they have to take us to Cheesy Hospital first. I thought quickly and decided not to argue. Better she get somewhere fast than to Columbia not fast. I called Allison. She came. I don’t remember if I called anyone else. The ambulance was there before Allison was. We brought R into the ambulance. Too many ambulances. I’ve been in too many ambulances lately. My family has been in too many ambulances lately.

She wouldn’t answer us. The paramedic was asking me things. I answered. She wasn’t speaking. She was mumbling. Suddenly she took her left hand and used it to pick up her right arm. She dropped her right arm and it flopped. She did it again. He spoke to her. He tried to get her to use her right arm and her right leg. She used her left instead. “Ok, now the other one.” She took her left hand and moved it in the other direction. He spoke to her. She mumbled. I stared. This might be her. This might be the new her. I opened my mouth and did not take my eyes off my daughter. תהילים קל. Twice. I tried a third time. The words were stuck. I stared at R. I tried to think. I couldn’t think. The paramedic talked on the radio. He tried to shield me by using abbreviations but I understood them all. He was deeply troubled. I stared. On the way in she moved her right arm. A thread of panic unraveled from the writhing knot inside me but the rest was still there.

More triage. Dr. S was already trying to arrange the transfer to Columbia. A nurse. An IV. A doctor. I sent text messages. Back in hospital with R, please daven. I think I sent those on the way out of the house, come to think of it. She started using her right side more. Lots of things happened but I don’t remember anymore. Finally they did a scan. The doctor came back. “The CT scan is not completely normal,” he said. “It shows a stroke – - – -” and I don’t know what he said next. Maybe he said something about the carotid artery. I don’t know. She’d already regained movement in her right side and was talking a little, though not enough.

And that’s all she wrote.

See, don’t you wish I’d finished it? Aren’t you sitting at the edge of your seat now, all caught up in the drama? I know I am.

Know what I felt when he said the word “stroke”? In some strange way, I felt relieved. Because that made sense, see. That was the only thing that made sense. Ok, she had a stroke; that’s why she couldn’t move her right side. That’s why all those things happened. Of course. And she wasn’t dead. I know strokes can kill you or paralyze you, but she wasn’t dead and she was already moving, and the stroke had already happened. So I was relieved to hear that the worst was over, and it had a name we could recognize.

Maybe that’s why I was able to tell BFFR and BFFD so comparatively easily when I called them. Because I was relieved. I was relieved almost as much as I was anything else. And in many ways, the pneumonia was worse. For days I was telling people the pneumonia was worse. “Most strokes are scarier than most pneumonia,” I said, who knows how many times. “But that pneumonia was worse than this stroke.” And it was. The pneumonia could have killed her and it took days and days before anything started to work.

[Ed. note: All done for now. Wasn't that fun? Stay tuned. I'm sure there will be more.]

Tags: Stroke