After three of the most 'not-boring' OIT weeks we've had as of yet, FINALLY we reached the next up-dose day. I approached it with both excitement and trepidation.
Before Coby got home from school I nearly worked myself into a panic attack. For a moment I even thought I felt a migraine coming on and I thought, 'just what I need now, a migraine to prevent this week's up-dose'. Thankfully I talked myself down and was able to slap on the happy/calm/excited mommy face by the time Coby got home from school.
"Today is your LAST capsule up-dose!"
"This is so exciting!!!!" he exclaimed.
Coby was excited and ready. For the last few weeks (ever since I printed out the sign for the 500mg up-dose) when he saw "Mr. Peanut" on the sign, he had been exclaiming, "I'm going to eat you Mr. Peanut!" He continued randomly doing it at today's appointment, literally talking to the piece of paper over and over so I told him I'd go ahead and video it.
As soon as we got to the office a bunch of the nurses came to greet Coby saying that it's been a while and they had missed him. They also checked out this week's OIT shirt. :)
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| REFUSE TO LOSE!!!! |
When I showed her she audibly gasped. "That is definitely hundreds of small hives all over him. I hadn't even realized this is what happened to him!" (When we had sent the pictures and paged the doctor in the moment, we hadn't spoken to Jessi, we spoke to the other doctor and nurses.) Jessi then said she no way would have been comfortable with going ahead with that week's up-dose had she realized this had happened. So all that hemming and hawing with me deciding whether to cancel that original up-dose appointment two weeks ago was for naught.... doctor wouldn't have wanted it- after all. I feel vindicated!
I cautiously then asked my question, "So had I noticed in the car ride home that while he was having that problem with his throat and his body was covered in these, I would have epi-penned him?"
And she said, "Since two body systems were involved, then technically that is anaphylaxis."
Inhale.
Exhale.
I mean, I KNEW it, but still hearing it straight from the doctor made it a bit more real.
So does that mean Coby now had two anaphylactic episodes?
I don't know...
I am hesitating to call the most recent one 'anaphylaxis' because it is possible the skin reacted a while after his throat fixed itself. Right? I mean, I didn't pull over the car to check him- who knows if his body looked like that during the ride home.
Maybe I'll call it one and a half times?
I don't know.
She went on to tell me that if what had happened to Coby happened in the office they would have started him on some medications like benadryl (sigh- I do NOT like benadryl) and steroids and then 'wait and watch' because in the office since they have everything there, they are more comfortable in waiting.
But when not in the office, you react.
Two body systems- epipen.
One severe body system- epipen. But she reminded me that we can always page them but it is better to epipen just in case, than not to have epippened- and have needed it.
Today I had read an incredibly strong article about a child who went into anaphylactic shock.
Like completely.
Like stopped breathing.
Turned blue.
Mother thought him dead.
CPR.
The works.
Very intense and powerful article. They had listened to the (very misnformed) 'pros' and delayed the epipen... Quite difficult to read but really really drives the point home. http://www.fortheloveofrepeatingmyself.com/mourning-a-child-that-didnt-die/?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork
I couldn't help but think about this article when Jessi said that it's always better to use the epi-pen just in case.
After checking his dosing journal and making sure he had several days of dosing at the full dose of 250mg with no side effects, she said that she and the doctor are confident in doing the jump from 250 to 500 at this point. But if I wanted her to, she can sort of mix the 500 with the 250 and find an 'in-between' dose of sorts.
I decided to just go ahead with the 500. After all both she and the doctor were okay with it and I doubted my abilities in re-creating this 'in between' dose once I got home.
She also told me that she wants Coby staying on probiotics for the rest of his treatment. (I do not yet know if that includes maintenance which means it'll be for the rest of forever, but will figure that out when the time comes.)
Coby begged her, "please don't make me eat capsule anymore. I hate it. Instead just give me a quarter of an actual peanut---- that's less than what I'm eating now anyway."
"Sorry, we can't do that just yet. Next week though we can move to actual peanut!"
So it was go time...
I opened that capsule and the flour was really bunched together in there. I literally turned the capsule halves upside down and only specks came out. Good thing I knew to bring toothpicks with me and I started poking at it with the toothpick. And lo and behold, take a wild guess what happened next.
YEP...
But, at least it didn't splinter into bunches of pieces and fall into the applesauce. I was able to hold on to the pieces that broke and managed to get out most of the peanut flour without dropping the 'shell fragments' into the apple-sauce.
Yeah, thanks James... I cannot wait for our relationship to be over.
And then it was time to dose. I wish I took a video. He was so cute. He had said he was so excited to be on his final capsule up-dose but in reality he seemed petrified. His eyes bugged out when he saw the amount.
And he really hated the smell. "EW, GROSS!!!"
He very hesitantly brought the spoon to his lips, though it was quite a few seconds before he actually opened his mouth to eat it.
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| "I don't know about this." |
Finally he opened his mouth and put the spoon in.
And then he took the spoon back out without his lips or tongue touching anything that was on the spoon.
Spoon in.
Spoon out.
Spoon in.
Spoon out.
This happened four or five times.
I had kept pushing the camera button so I wouldn't miss the moment of consumption. I so wish it was a video...
"Come on Coby, you got this!"
And he did it!
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| MORE THAN AN ENTIRE PEANUT!!!! |
Just a few minutes in he began scratching at his shoulder. And then his back. And then his chest.
I checked him out but didn't see anything.
"You can stay 15 minutes longer than you usually do if that will make you more comfortable."
Most of the time went by fine. A bit of scratching. A bit of eye rubbing. But okay enough...
After his entire 60 (75?) minutes went by and they did his full check up- heart, lungs, pulse, skin, blood oxygen etc, they said he was good to go.
That is the point I usually update facebook with a "HE PASSED!"
But this time I didn't. I was too scared to write that. I was afraid that would tempt fate. I was terrified about what was going to happen on the ride home and when we got home. I was afraid of jinxing it.
She said, "See you next week---- for peanut day!!! That is a HUGE deal here!"
We wished her a great week and left.
I didn't optimistically leave as I usually did because I still was not confident he passed. I didn't trust that we'd be back next Thursday because a huge part of me thought there is no way his body will accept the jump from 250 to 500.
And we began the drive home.
And I kept stealing glances at him in the rear-view mirror.
"Stop looking at me all the time!"
"But you're cute."
He was getting mad at me for all my glances so instead I just tried talking to him (so I can listen for a change in his voice/phlegminess, clearing it), but he still got mad at me. "Stop talking! I am tired! I don't want to talk!"
Of course my sensor went off because while being exhausted after an up-dose is normal to a degree- last time the tired-ness is what started his spiral.
So instead I talked to myself informing Coby I needed to talk out loud 'to keep myself company'. I made up ridiculous monologues on the spot (thanks improv skills!) which of course had Coby in hysterics and he just couldn't help but put his two sense in. And so I kept him engaged and talking. And what he thought was, "Oh my gosh, you're so cray cray" was actually my ploy to keep him awake (because falling asleep within two hours after dosing is bad) ,gave him a second wind, and enabled me to listen for a change in his voice.
As we pulled into the driveway I said, "So Coby, this may have been your last Thursday of capsule! Do you think we'll be coming back next week for actual peanut?!"
"Yeah!!!"
"Don't you think that one of these days we'll need to open the box that has the peanuts. It's been sealed up for about a month now!"
"How about next week when we go you just carry in the sealed box of peanuts to them. It will make them all laugh!"
"Um. No."
In the end we agreed that if Coby has three days of dosing at the 500mg level with no problems at all, together we'll open that box on Sunday.
We went into the house and Coby had to rush to the bathroom.
And my alarm went off.
Every few moments I called out to him.
At one point when he didn't answer a couple of calls my heart just about stopped.
But all was good.
Inhale.
Exhale.
And three hours out continues to be good!
A bit of me is still quite traumatized from what happened last time.
A bit of me is still unsure what to believe.
A bit of me is unsure if my kid is really going to consume actual peanut at our very next appointment
But we have the ability to tuck those doubts aside and continue to move forward.
Fake it til we make it.
After all, with all this, it's not really what we feel, but what we do.
And so. We do...
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