SOOOOO FRUSTRATED

I was taking graduation date for granted. It was gonna be smooth sailing and today everything had to turn unknown again. And may get scary. Again.

DAMMIT

Once a week Coby has to dose with peanut butter. 10 peanuts equals 2 and a half teaspoons of this particular brand.

He HATES peanut butter.

Every week it is a fight that lasts at least a half hour and is the worst part of all of our's week.

Usually we do it on shabbos.

We decided to do it today, since tomorrow is Coby's birthday and we didn't want to put him through it on his birthday.

And I decided to take pix before he began dosing since I document everything and I can't do this on Shabbos.

 


After carbing up Coby spent 40 minutes fighting us, holding his nose, saying 'wait, wait... give me another 2 minutes.... another minute... another 10 seconds, another minute..' 

"Your stomach won't be cushioned by carbs anymore Coby, COME ON."

40 minutes in he takes his first bite. (Once taking first bite he has to finish it within 5 minutes)

And he gulped a whole bunch of water.

"Don't drink so much water with each bite, you will fill up your belly and have a problem. Save it."

BUT HE REFUSED TO TAKE MORE BITES WITHOUT MORE WATER.

So what happens?

When he was about 40% done his eyes get big and he begins gagging, tries to close his mouth and LIQUID PEANUT BUTTER CAME SPEWING OUT HIS NOSE.

IT WAS A FRIGGIN NOSE BLEED IN PEANUT BUTTER!

He then opened his mouth and it came pouring out of his mouth too.

We knew it was NOT a reaction. It was the too much water bringing all the peanut butter back up.

BLEEPIN CRAP CRAP.

last time this happened he ended up YES having a reaction because instead of the peanuts going just one way down the throat, they went down and back up.

Today they went down the throat, back up the throat AND BACK UP THE NOSE.

We paged our doctor. What do we do? He didn't even finish the original dose. How much of what he threw up do we replace? What's the chance of having a reaction now.

She called back in under a minute and said to scrape off the remaining peanut butter, put it back in teaspoons to determine the equivalence of peanuts and give him the remaining of today's dose in peanuts.

She said not to try to replace the peanut butter he consumed and and spewed back up because there is no telling how much stayed in his stomach and we can't over-dose him.

She said not to worry if we end up inadvertently down-dosing him because even if he skipped one day completely this early in the week (day 1 of home dosing at this dose), he still is set to graduate IF the rest of the week goes well.

BUT HE HAS TO REDO THIS PEANUT BUTTER DOSE BEFOREHAND!!! (We won't make him do it on his birthday, but we get to repeat this fun on Sunday.)

5 minutes later the phone rings again with the doctor calling, "ARE YOU POSITIVE THAT HIS THROWING UP WAS NOT A REACTION TO THE DOSE, BUT HIM PSYCHING HIMSELF OUT ABOUT IT AND DRINKING TOO MUCH WATER?"

YES, WE ARE POSITIVE.

Meanwhile Coby sounds crazy congested because of throwing up through his mouth and nose and we have to be on heightened alert for a possible reaction because of that. The doctor tried to calm us down saying, 'at this point he should have enough protection from that happening because of it coming back up,' but you never know.

DAMMIT.

We get to do this fun again on Sunday in order to bring him to graduation. If he is successful we still get to graduate this Thursday.

If not...

????

And then we have to do it one more time next weekend to make sure he is ready for that food challenge and free eating.

Now we are an hour post this crazy dose and he still sounds crazy congested. If it was all realted to his peanut butter nose bleed, shouldn't that have ended? Shouldn't he sound clear now? Is this now reaction related? Do we have to treat it?

Paging the doctor again...

And he is now taking benadryl and hopefully that'll clear him up.

Meanwhile she is talking about down-dosing him and pushing him off graduation.

We begged her telling her this is NOT real. This is him psyching himself out and then drinking too much water. She said tomorrow we should dose him with 8 peanuts. If he is fine, then 20 minutes later to do the last two peanuts. If that goes well hopefully we can continue on. If she speaks to Dr. Selter and he says push it off we lose another week.

COME ON.

THIS WAS ALL PSYCHOLOGICAL FIGHT FOLLOWED BY STRESS AND TOO MUCH WATER. THAT IS WHAT IS CAUSING THIS.

We are all so stressed and frustrated right now.

I need to calm down, breathe, regroup and try to pep my kid up again.

Do not take this away from us...

****and i bleepin' screwed up. i accidentally gave him 1 and a half tsp of zyrtec (he had been on 1 tsp zyrtec for months, but off it totally for 2 weeks now) instead of benadryl so had to page doctor AGAIN. (She said zyrtec will work similarly to benadryl and not to give him benadryl too.)

THIS IS DOING ME IN.

Saturday night update--- he remained congested the entire night and slept in my bed. He remained congested the entire today as well. When he woke up he had what looked like a heat rash on his chest too which we don't understand.

The doctor had him dose with 8 peanuts today, followed by the last 2 20 minutes later. He did fine. We hope to do the 10 peanuts all together tomorrow.
The doctor told us do NOT dose again with peanut butter this week.
Hoping if the week goes well she will allow us to updose to the 12 this Thursday and graduate despite not having a full peanut butter dose.
Unsure....
We shall see.
If not, graduation will hopefully just be next Thursday instead of this.
Fingers crossed we can still be on schedule.