Okay. Yesterday was stressful.
We've been waiting more than six years for this test. Leander was diagnosed with allergies more than six years ago, when he was ten months old. Most children outgrow their egg allergy by the age of (depending on where you get your information) three or five. Leander is seven. Children who outgrow their egg allergy often still show a positive blood test, so the only way to know if they have outgrown it is to perform a challenge.
On my way to pick up Ouma (the hospital prefers that the parent of a food challenge child (a food challenger?) not have other children in tow to look after), I had a silent conversation with myself in the car.
What are you expecting today?I just want to get it over with, I said. We've waited for this for six years.
But what do you think is going to happen?Hopefully, he'll have no reaction. In which case, I'm going to go home and bake a loaf of zucchini bread. WITH EGG. Because it is SO hard to bake without eggs.
But what if he has a reaction? What do you think is going to happen?Okay, okay, okay. Stop nagging. Maybe he'll have a rash, and I'll keep using baking soda and vinegar in the zucchini bread, and it won't rise, and that's fine. Maybe next year. Now shut up and go away.
Those are the only two possible outcomes I imagined. Leander hasn't had any reactions to egg. Most kids outgrow the egg allergy. His blood test results are low. He's well over the age he should outgrow the allergy. So we test him.
We checked in, and asked how long the process was expected to take. Ouma took Eddie and Oliver and a bag of snacks to the park, with instructions to return in two hours.
The challenge started a little late; they were very busy. All eight chairs in the room were full, some with children having food challenges, and some with children having other treatments. Curiosity nearly kills me in those situations, but it’s none of my business why the small boy has hugely swollen forearms and hands, or why the teenager with the friendly, pleasant expression is such a terrible greenish color.
A lovely nurse (they were all lovely. Nurses are so often lovely) introduced herself and explained the procedure. Then she checked Leander all over for any rashes or marks that he might have before the challenge, so she would be aware of any changes. Leander is a boy, and has two brothers. Ergo, he has marks.
She indicated that the stuff they were going to give him might be yucky. She said they usually mix it with some juice, but CSID means Leander can't have juice.
"He'll be fine," I said. "His name means 'brave man,' and he is."
"Well," she said. "We'll see how that pans out for you today, then, won't we?"
First on the menu was a 5 ml dilution of egg in water, in the ratio of 1 to 100. She gave this to Leander in a syringe, so as to shoot it down his throat a little faster (imagine warm tap water with a bit of egg in it. Yuck doesn't quite describe it.) Wait ten minutes, do observations. We made an origami sperm whale, following directions in an activity book I brought.
Leander had no reaction, so about ten minutes later, she proceeded to step two: a 1 to 10 dilution of egg to water, again 5 mls. The kid next to us left, and the nurse gave us the entertainment center he'd been using. We worked out how to race cars on the Nintendo, and ten minutes later, observations showed no reaction.
Step three is a bit of a jump: 5 mls of raw egg. Yup, icky. But Leander swallowed it like a champ, followed it with a sip of water and a couple of Pringles, and grabbed up the Nintendo controls again. Ouma arrived back with Eddie and Oliver. I stepped into the hallway, about twelve feet away, in full view of Leander (all glass windows and walls, and open doorways) to tell them that the challenge had started a little bit late, and that Leander would be at least another hour. Eddie slipped inside to have a go at the Nintendo, while I chatted with Ouma.
Leander put down his controls (should have been my first hint), got off the cushy recliner, and came to me. He looked absolutely fine, but he said, “Mommy, my chest feels icky.”
Okay. Okay, that’s okay. I think I excused myself from Ouma, but I may have just rudely left. I’m not sure. There weren’t any nurses in the room just then, so I went through to the back room, and said, “Excuse me? Leander says his chest feels icky.”
One of them followed (the lovely nurse who started the challenge had gone off to lunch a little while before), and I persuaded Eddie (with a little bit of pleasantness, and a little bit of a growl) to put down the Nintendo, and go with Ouma. Ouma’s very good at the quiet, quick fade, and she whisked the children back to the park.
Leander looked fine, though he still said his chest felt icky. No, he wasn’t going to throw up. No, he wasn’t having trouble breathing. But his chest still felt icky. Did he feel better, worse, or the same? The same.
But, and this is the most frightening part of all, and should have been our biggest clue: he didn’t want to play Nintendo, and he didn’t want me to put a movie on.
The nurse checked his chest for a telltale rash (he’s never gotten one there, but it’s a major sign of anaphylaxis). Nothing. No rashes on the insides of his elbows, no swelling of his lips, and he still said he wasn’t going to throw up. Better, worse, or the same? The same.
I kept looking at his eyes. They were exactly the same, but... not quite. They weren't (quite) a slight shade of purple. They weren't (quite) swollen at all. They didn't (quite) look a little dark underneath. There wasn't anything there I could point to. He looked exactly the same. Almost.
And then there was a tiny little red mark under his right eye, and he scratched it.
Better, worse, or the same? The same.
And then a small cough, just twice, almost like a clearing of the throat.
The changes after that were so tiny, it was difficult to see them. In fact, the nurses weren’t watching him; one of them decided he might need his inhaler for the cough, and went to phone a doctor for an order. Little tears began to drip from Leander’s eyes, and he asked for a tissue to blow his nose. I stopped going back and forth to the tissue box, and brought it to the chair. I needed more of them for me than for him. If I wasn’t pregnant, I would have been able to stop crying, but as it was, I couldn't. Better, worse, or the same? The same.
I got the order for four puffs of Ventolin, to be given at once, and since I had the inhaler and spacer ready, we did that immediately, Leander taking calm, deep breaths just like he's supposed to. With no effect. Those two little coughs were now coming every five or ten seconds (I’m guessing; time loses a lot of perspective in situations like this). Better, worse or the same? The same.
Another few minutes of coughing, more tears, no other changes: no rash, no swelling. And then... better worse or the same? “Worse.” Did he feel like he might throw up? Yes.
Now, I'm good with all sorts of medical emergencies: bleeding, fainting, injury, needles, whatever. Vomit, however, is not my bag. I ran back to where the nurses were, and, trying to choke words through the tears, said, “Something to throw up in!” What? “Throw up! Bucket! Something!”
I went back to Leander, too aware that the other seven parent/child combinations in the room were picking up on the change in atmosphere very quickly. I felt terrible for the woman next to us, whose very small child had just begun an egg challenge. She spoke almost no English, and must have been terrified at what she was witnessing.
The nurse comes with a disposable bowl-thing, and Leander holds it under his chin. I watch tears fall into it. Another nurse brings an antihistamine, having called the doctor for that order as well. I hold the little plastic cup and Leander gulps it down. It has no effect.
Next thing I realize, there's a half-circle of medical personnel around us. The doctor has arrived (not our doctor, but the fellow, who, I believe, handles all the decisions that arise during these challenges), and stands there with a clipboard. She says, “I can’t order adrenaline at this point.” No swelling, the cough is the same, no rash.
But they all stand there, watching. Leander is crying now, and he says to me, “I want to feel better. I want to feel better!” All those tiny little changes mean that now he's a little purplish around the edges, with a leaky nose and leaky eyes, a slight cough, and a slumped posture.
It's like watching time-lapse photography of a sunflower losing its glory. You don't see it happen as the minutes pass, and then you notice that the color has faded, and the petals have drooped.
Somewhere in there, I look up and see the doctor, literally, drop her jaw as Leander’s oxygen saturation falls to 92%. I refocus on Leander, who says to me, “I want the epi-pen!”
Who would ask for something like that? He’s had adrenaline once before, and it HURTS.
The doctor is next to me now, and I say to her, far more calmly and clearly than I feel, “He’s asking for the epi-pen. I’m not saying you should give it to him just because he’s asking for it, but you should know that he is seriously distressed right now.” A long speech, considering all the hormones welling up in my throat.
She says to me, and she's really listening, “Is he distressed?”
Some of you know Leander, and some of you don’t. Stoic doesn’t begin to describe him. I think if he broke his arm, he’d give a little shake, and insist he was fine (unless Eddie did it to him, in which case he’d scream bloody murder).
I say, “He is a very calm child. Believe me when I tell you he does not react like this. This is him, severely distressed.” I am not the expert, but somebody had better do something SOON. Or else. Or else I might have to actually say out loud what is screaming silently in my head: DO SOMETHING.
DO IT.The cough is just slightly more persistent now, and Leander is more visibly - to me - panicking. This. Is. Not. Right. Things are very definitely - but so very imperceptibly - wrong.
The doctor's lips move very slowly as she says, “Administer adrenaline.”
A nurse has already gotten the epi-pen. Someone says to me, “Do you want to do it?”
I can’t talk at all. I can’t speak. I can’t explain that I've had six years of nightmares about giving him that shot, that I've done it in a million dreams, asleep and awake. That I have, in my head, held that little thigh and plunged in the needle over and over and over, but that I have a terrible block about doing it in real life. That my hugest fear is that I will need to do it, but will be unable to.
It’s not the needle-into-flesh aspect that terrifies me; it’s the fact that my little boy is so close to death, and I need to save his life. Why do I have such a block on that? Isn't that the thing any mother would most want to do? Save her child's life? Why is it so hard? Is it because I so strongly do not want that situation to occur that if I refuse to accept it, it won't be happening?
I nod. Someone asks again, “Do you want to do it?”
“Yes,” I say. “Yes.”
Then the needle is in my hand, open and with the safety removed.
I look straight at Leander. “I’m going to do it, okay?” I say. He nods. “It’s going to hurt,” I tell him. He nods.
Needle in my right hand, I push his shorts out of the way with my left hand. That perfect, soft skin is no accident. Years of diligence and effort made that skin perfect. For the six years I've been fearing this moment, in the second or two it takes my hand to slip up his thigh, it changes from the soft, tiny leg I've practiced on in my head to the strong, long thigh he has spent years developing.
In my head, like I’ve done a million times before, I imagine the line from his kneecap to his hip, and the perpendicular line bisecting it, but I am distracted by the perfect planes of his muscles. Who am I kidding? I know exactly where that needle goes. I could find the spot with my eyes closed.
I put my left index finger on the upper, outer quadrant of his thigh, chanting in my head
upper, outer, like I have a million times before. I look up at the woman standing in front of me. She looks blankly at me. I tap my finger, and she nods.
Do I plunge? Or do I place and push firmly? I have held that debate for years, with no resolution. I feel me take hold of myself and make the decision. Slowly, calmly, I place the needle gently on his thigh, I grip his thigh firmly with my left hand so he can’t flinch, and I PUSH.
All there is in the universe is that smooth, hard thigh under my fingers, the firm steady pressure of the needle, and a slow, calm voice in my head counting, “One... two... three...”
But I only get to four, and the same woman who blanked me on the location is pushing my wrist away from his thigh. I hold firm, the needle doesn't waver, and I look up at her. She pushes my wrist again, harder, so I obey, and pull out the needle, and it disappears from my hand.
I hold Leander tight against me. He’d cried out when I pushed the needle in; I could hear the echo of it now that the needle was gone. He was crying still, saying again, “I want to feel better! I want to feel better!”
“You will, baby, you will." I'm holding him tightly. "It takes just a minute." I'm wiping his eyes, wiping my eyes. "Just hold on a minute.” And while I was still talking, I could hear a voice in the semi-circle say, “That worked. Look at his pulse now - 162.”
And finally the tiniest of shifts, and the panic in Leander's cries slips away. Another voice says, “There it is.”
"I am so sorry, baby," I whisper into his ear.
"Thank you for doing it," he says back to me.
And it's over. Observations were done every minute, then every five minutes, then he picked up the Nintendo and only hit pause every fifteen minutes for his blood pressure, pulse and oxygen levels. He had to wait four hours to be sure he didn't have a rebound reaction, and then, when everyone else had packed up and gone, we were allowed to leave.
During that long wait, I took Oliver to his appointment at the allergist (whose offices are across the street). He tells me, immediately, that I deserve a G&T, or, at the very least, to put my feet up for a while. The doctor who ordered the adrenaline told him I did a great job, that Leander and I were both very brave, that because of us, he's going to review with all staff and make it a priority to have the parent administer the epi-pen. I am empowered. I have DONE IT.
He apologizes for anaphylaxing my child (he makes it a verb, and it works for him). But it's not his fault, it was a risk, the test had to be done, and I don't blame him one bit. I appreciate his compassion. He tells me they administer adrenaline about once a month. This is intended as comfort, but I am appalled that Leander is one of the tiny few.
He performs a skin prick test on Oliver, on the basis that, at the age of four and a half, Oliver would have had some accidental exposure to peanut and egg (why do people persist in underestimating me? No accidental exposure is allowed in my world). I think he is unwilling to subject me to another challenge in three weeks, which is what he told us, more than a year ago, we would do with Oliver. Both skin tests are negative, and we have no reason to believe Oliver has any allergies. The test has only been done because the school has given us such problems, and we need to know where we stand before Oliver starts going. The doctor, who got us through the last hassle with the school, tells me that if we have any further troubles, a letter to the Minister will do the trick. He gives me instructions for working out Eddie's reactions to fish, and the name of an allergist for Duncan's bee stings, and he confirms that I should have held the needle in till the count of ten (surmising that perhaps that woman had counted VERY quickly), and we're done. We will see him again in two years.
My sister-in-law arrives to pick up Eddie, Oliver and Ouma (who has been sitting with Leander while I was at the allergist), and I sit with Leander and the Nintendo to wait out the rest of the four hours.
We did it, my little boy and I. He told me he needed to be saved, and I saved him. And I don't care how it sounds for me to say it: I am damn proud of us both.
Labels: allergies, boys, CSID, daily, egg challenge, leander
