And in hindsight it may have even warranted an epi and I am so mad at myself for not recognizing it in the moment.
In the moment it is so easy to dismiss something. To justify it away.
I had a premonition going into today's appointment.
I had a weird feeling at the end of the appointment.
But I dismissed it all....
Before going into today's updose appointment I felt sick. Not sick as in coming down with something. But my head was pounding. My stomach pounding. Felt like I was going to throw up---- but I knew it was nerves. Though I didn't know why.
Yeah, obviously every dose, every appointment is scary. The potential of a reaction is there. BUT this particular appointment while it was an up-dose, wasn't very different than last week's (both were a 75mg increase). This was not a HUGE jump (like it will be next time). Today was not a change of peanut form, which can often bring out reactions. It was just a regular up-dose. Yet for some unknown reason my nerves were beyond regular.
I even posted as my status update on facebook that 'hope this is not a premonition', shortly BEFORE heading out to the appointment. Yeah I've posted nerves before but never called it a 'premonition'. Until today. I even called Yitz before I left and asked him if me feeling crappy was a premonition and that I shouldn't get in the car and that I shouldn't take Coby to today's appointment.
But I dismissed it.
Took some pain relievers.
But otherwise dismissed it.
I didn't even want to get dressed to go- so I sort of didn't. I put on black lounge pants that I never go out in public with but this time I felt I needed to be in comfy clothes so I wore that instead of jeans.
And we went.
After his hour of observation was up and we went into the doctor's office for a re-check, I had yet another gut feeling.
Which again I dismissed.
Coby had laid down on the table. He NEVER does that.
When the doctor came in she listened to his breathing and questioned how he felt.
He said, "fine, but I'm very tired."
He's been tired after dosing before. It can be normal. After all it's hard work as the body fights off an even larger dose.
But tired can also indicate a bigger reaction.
But I dismissed it.
I even kidded around about how we let him stay up late last night to watch Survivor, and he was still awake at close to ten.
But he never ever lay down on the table before.
And I dismissed it.
As we headed to the car he told me to please hurry because he really needed to go to the bathroom.
I told him I can bring him back inside and he can go now.
He said he wants to wait until he is home and that he can hold it because he was holding it for quite a while.
I began to question him how his stomach felt, when did he start really having to go to the bathroom (because that can indicate a stomach problem/reaction).He told me he thinks he had to go since right before dosing.
So I dismissed it. Because he said 'before' dosing. And having to go can just be a regular 'having to go'.
In the car ride home when he was talking to me his voice sounded a bit off.
I turned off the radio and asked him if he was okay.
He insisted he was fine and that he just swallowed wrong.
I told him to try clearing his throat. So he did. It still sounded off.
But I accepted the 'wrong swallow' since that has happened before. (though now I wonder about all the other times he 'swallowed wrong'--- what if it was more than that.)
So I dismissed it.
He then began to cough.
Are you okay?
Yes, this is just still from my wrong swallow.
Is your throat itching?
No.
Does your throat hurt?
No.
Can you breathe completely normally?
Yes.
I continued, "We are still near the doctor. I can turn this car around and go back. They can help us."
I HAD NEVER BEFORE SAID THAT TO HIM ON THE WAY HOME FROM AN APPOINTMENT.
He insisted he was fine.
I told him to again clear his throat. He did.
Again I dismissed it and I kept driving.
Every few minutes I questioned him.
Something wasn't sitting right. I started singing him one of the songs from his allergy cd that we haven't listened to in months. Singing about how not to keep a reaction a secret. "If I feel bad I will tell my dad, if I feel funny I will tell my mommy. We never keep a reaction a secret...." I never did that before in all of our prior appointments. I never felt like I had to remind him of that.
He said, "I know, I know."
And I dismissed it.
Moments later his voice sounded phlegmy again.
Are you okay?
Yes.
What is going on?
This is still from my wrong swallow.
That makes no sense!
He started to make jokes and giggle and talk and he sounded fine again.
So I dismissed it.
After all he said he was fine. He was happy. He was playful. The doctor had already checked him and discharged us and said he was fine to go.
So I dismissed it.
I mean, Coby is never one to complain. He always puts on a brave face. When he gets fever of 105s he insists he feels fine. Amazing that he is always like that, but also sometimes you need your kid to complain!
He reminds me of his brother Josh. Josh never complained. Not when he had pneumonias. Not when he had swine flu. Never ever ever. And his birthday buddy (well almost; they are one day apart)--- is the same exact way.
When we got home Coby went to the bathroom.
He then watched some tv as I blogged from the other side of the room.
He was lying down on the couch.
"Why are you lying down Coby? You don't usually do that."
"I'm just tired."
Okay.
So I dismissed it.
I started wondering why he was not begging me for the computer.
That was not like him. Usually he yells at me to get off the computer so he can have a turn.
Instead he was lying down watching tv.
I stopped dismissing it.
I called him over.
His face seemed a little bit blotchy. Two days ago he had come home from school with his eczema acting up on one side of his face, but it had mostly faded away by earlier today. But now it seemed a bit irritated again.
Maybe that's just my imagination?
As I was finishing up my blog post from a few hours ago, I decided to examine his body. So I pulled up his shirt.
HOLY CRAP! Pictures don't do it 'justice'. He had hundreds of spots all over. Some were white. Some were pink. Some were smaller. Some were bigger. On his arms. His back. His trunk.
We quickly paged our doctor and e mailed them the pictures. A nurse quickly called us back but upon seeing the pictures she said that some spots look like irritation, some like a rash and a bunch of others like small hives and she paged the main doctor who was on the phone in under two minutes.
We had him on speaker as he doctor questioned us and questioned Coby who said, "I feel fine. My throat hurt a little bit before though." (WHICH HE NEVER ADMITTED TO ME!)
Coby went on to say, "I'm not itchy." So we then pointed out all the scratch marks that he had on his body from his scratching.
"Oh I didn't realize."
The doctor said to keep an eye on him for at least another hour. He said that while we are already out of the 'two hour period' post-dose, where the risk of reaction is at its highest, it is not unheard of to have delayed reactions many hours later. He told us that if Coby's breathing does not become labored and the itching doesn't get worse to 'let it ride', and not even medicate him.
I was happy about not medicating him because one of my biggest fears is that medicating him with the lesser medicines of benadryl and oral steroids would mask anaphylaxis, which had happened in some of the kids who died from their peanut allergy. They took benadryl which masked their symptoms and when it became clear what was happening, it was too late.
I didn't want to mask anything.
I took a breath and said, "Coby---- you need to tell me when you are having any type of reaction!"
He responded, "But my face wasn't red."
WHAT?
Apparently for some unknown reason Coby thought as long as his face doesn't turn a deep red it can't be a real reaction. I do not know where he got that from. I had always thought we did such a good job in teaching Coby about this. He has caught labeling problems. He stopped people from giving him things with peanuts. He realized when something was 'off' in someone or something else.
But not in himself....
I kept Coby glued to my side for hours. In fact he is still awake now at 10:03 because we were scared to let him go to sleep. I will sleep with him tonight.
BUT....
Thinking back.
At the end of the hour.
Lying down on the table.
In the parking lot.
Having to go to the bathroom.
In the car.
On the way home.
He was clearing his throat.
He was coughing.
I did not pull the car over.
If I trusted my gut.
And I pulled the damn car over. Somewhere. And I examined him myself. And I noticed what was spreading all over his trunk. His arms. His back. Would I have been able, in the moment, to recognize that Coby was indeed having a TWO SYSTEM REACTION? A REACTION INVOLVING TWO BODY SYSTEMS IS ANAPHYLAXIS. Skin and his throat. That warrants an epipen and a call to 911 and a trip to the hospital.
WOULD I have recognized it? Or would I have dismissed it. I mean, maybe the rash and hives only came about hours after the throat thing. And here I go rationalizing it away again.
It's too easy to dismiss things 'in the moment'. Even when he was having his big initial anaphylactic reaction, years ago, everything moved in slow motion. I questioned what was real. I took it slow. I dawdled before paging the doctor. I was nice and calm in the moment and didn't rush the paramedics as they seemed to take their own sweet time as well. When we were later told that he was moments away from dying.
I didn't realize then.
I dismissed it all now.
I had a gut feeling.
But I dismissed it.
Again and again and again.
And I am still questioning everything.
We are now 5 hours out of his dosing. He still has hundreds of spots, but most have faded in color and many faded completely away. Not out of the woods yet- but heading in the right direction.
(I guess that while James screwed up the outside shell and giving us the same one as the 100s, it's kind of obvious now that he did in fact updose today--- unless Coby is about to get sick- b/c an illness can bring out a reaction as well... and here I go second guessing myself again).
I hope tonight is a peaceful one. I pray that Coby tolerates the rest of the week's dosing at this level of 250 better than he has tonight.
I realize that if he doesn't, we will have to down-dose or remain on this dose a bit longer than the usual single week. I also realize that if we need to remain on it longer, that I don't have enough capsules to get us past a single week since one shattered at the doctor's office today.
Again.
"Just because you're paranoid, it doesn't mean they're NOT out to get you." How will I know how to recognize what in fact IS a true emergency and needs immediate response vs. something that I simply attribute to the anxious personality that I have.
What should be dismissed?
What shouldn't?
Tonight I just dismissed.
I shouldn't have.
And I considered myself an 'expert'.
I am not giving up.
If anything this just shows me how important it is to get my kid desensitized.
To keep my kid safe.
Because if when push comes to shove I just 'dismissed', and I thought I 'knew it all'.... how can I expect him to remain safe out there in the real world with all the 'non-experts'?
Tonight I didn't do my job.
Not by a long-shot.
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