DAY ONE

And now we have day one of OIT behind us! And what a loooooong day it was! I woke up at 4:30sh too nervous to try and sleep anymore and Coby woke up an hour before he usually does because he 

was sooooo excited to begin. Two ways of looking at the same exact thing.

We packed up and drove up and were very impressed with the room we were given. It was HUGE! And Coby had his very own nurse who made sure he was okay throughout the day never leaving the room without calling in a 'sub' if she had to run out for a minute. 

couldn't fit room into one frame- the nurse was right behind the glass windows (which are longer than what appear and remained open)

Coby quickly got nice and comfy! Upon arriving they realized that Coby's nose was already a bit congested & had a bit of a 'whistle' when breathing. DAMN YOU ENVIRONMENTAL ALLERGIES!  (They warned us that environmental flare ups can make reactions to the food allergen worse and we were instructed to add a daily dose of zyrtec and flonaze each day.) We were also shown Coby's recent labwork which showed us his numbers are crazy high and his allergy is quite severe. (Who woulda thunk?!) After answering my next dozen questions, (I kid you not!) they decided to start Coby's doses on a smaller dose than they usually begin with to make sure he was as safe as possible. THEY STARTED HIM ON A DOSE SMALLER THAN ONE ONE MILLIONTH OF A PEANUT!!!!! The nurse would spend the day checking his vitals--- performing a peak test to check on lung capacity, his blood pressure, his pulse, the oxygens level in his blood, his breathing and skin for hives. This would occur before each updose (& during each 'reaction')

Mickey Mouse Scrubs! I think we'll get along just fine!

VERY FIRST DOSE!!!!!

In between dosing Coby would spend his time reading, playing games, watching movies and eating (got to keep his tummy 'padded' with certain foods like breads for carbohydrates and applesauce that

Coby always manages to cream me in chess no matter what!)

has some magic power when going through OIT)

feeling a bit shleppy & watching a movie

Yitz spoon feeding him his applesauce

Coby loooooved the doses. Microscopic amounts of 'nothing' dissolved in yummy grape koolaid! (yep, kosher), and he'd be begging them for extra doses. He would get all excited when the nurse would come over to check his peak flow rate (knowing more 'grapejuice' would follow) and he would try to blow as hard as he could, asking for 'do-overs' to try to beat his 'score'. He wasn't so happy about the pulse monitor/blood oxygen checker because it was hard to hold his finger up so he would lean his arm on something to support the weight and watch those digital numbers flit about.

After the first couple of the doses a random spot would appear on various parts of Coby's body- under his chin, his upper right chest etc. Each time this would happen, they would pause our next dose and observe him for a while before deciding whether or not to proceed. At different times Coby would appear 'shleppy' and tired and his face would be flushed or his ear would turn red. Nothing too bad, but enough to make us stop and watch and wait with baited breath.... and continue on.

At 3:15 they gave Coby his 16th dose, which was a level FOUR HUNDRED TIMES HIGHER than his initial dose! (And I was excited we made it to 3:15 because when we did the doctor agreed that I would only have to dose him from now on late afternoons. It's supposed to be a 24-25 hour window between dosing and had Coby stopped earlier I would have had to wake him up at 5AM tomorrow to do two doses 12 hours apart. In my head I already decided I'd keep him home from school too scared about possible reactions. Once we got to 3:15PM and the doctor told us we'd be able to wait until 4PM tomorrow I was so happy we were back to single day dosing. #smallvictories!

During this "15 minute watch" things seemed to have been taken up a notch. Extra nurses and doctors running in. Some wiping of his nose. Itchy and watery eyes. A hand scratching his left cheek. A hand scratching his neck. A hand scratching his right cheek. A hand scratching his chest. A couple of coughs. Hmmmmm. No new hives appeared to be visible. Except there were a few small bumps that didn't look like hives on his belly. Hmmmmm. We were told it SHOULD be okay, we probably would be able to proceed to dose 17. Just before he was to be given dose 17 he started rubbing and scratching a bit more. HOLD UP THAT DOSE! A few nurses checked him out again, and another doctor and then the main doctor. And they decided to call it a day. Coby was given some medicine and observed for nearly another 3 hours before we were allowed to leave. At that point we had been there for eight and a half hours. They packed a cooler with us with our 'at home dosing' showed us how to fill the syringe properly. They decided that our 'at home' dose would be the same amount as Coby's FIFTEENTH dose, and not risk the one (#sweet16) that caused the bigger reaction. FIFTEEN DOSES, okay that was two hundred times Coby's original dose--- it's gotta be something significant, right? Right?

Exasperated sigh.

They are sending him home with a dosage of 50 micrograms. How much of a peanut is 50 micrograms- I mean it's gotta be 'something' since smaller doses had already caused some itching and the following dose caused even more of an reaction.... 

Exasperated sigh.

50 micrograms is the equivalent to about 1/6000th of a peanut. Yes ladies and gentlemen, you are reading that correctly. ONE. SIX. THOUSANDTH. OF A PEANUT. Picture that. Picture that tiny peanut- break that into SIX THOUSAND PIECES--- take one of those pieces, and that is our at home dose that still has the capability of causing reaction if taken too close to a hot bath or too close to exercise or if Coby isn't feeling well or just because. ONE SIX THOUSANDTH.

And it's ironic because our doctor's original goal is for a patient to get through the entire day of 26 doses which the ending dose being the equivalent of 1/50th of a peanut. And that scared me. Because his regular allergist told us something as small as 1/100th can close Coby's throat in seconds. And it worried me because I read that people who do get all the way to the 1/50th dose (5mg) tend to have more adverse reactions going forward, so we had asked our doctor to please stop us at the 3mg dose (if no reactions) which is the equivalent to slightly more than the 1/100th dose. He had agreed---- yet we had to stop much earlier than that at about one percent of what the doctor's original end goal of day one was. ONE PERCENT!!!!!

And I wasn't sure what to feel. I was relieved Coby didn't go into anaphylaxis. I was relieved the doctor was playing it safe. But I was also so frustrated that after all these hours we made it just 1% to the original end goal of today. And I was so scared that Coby was reacting to particles of peanut so much smaller than the 1/100th we were told. But again, thank G-d not anaphylaxis; Coby remained safe enough today. And we started our journey. And this journey is not a race. And I read so many stories of kids as allergic as Coby who even went into anaphylaxis several times during OIT who graduated. They made it. This is not a race Stacey. (must keep repeating that to myself) I just have to keep putting one foot in front of another and we will get there dammit!

I cannot believe we even went through what we did today. I cannot believe we actually took this step. 

Yes it took several hours and it was a bit scary, but we started what we needed to start. It does not have to be a running jump to start, it's just got to be a baby step in the right direction. 

When we were finally discharged and instructed how to give the doses to Coby at home and how to watch him and observe and call if we need any guidance and how we need to keep a detailed record of any and all reactions (and told that IYH next Thursday we will go back to have Coby updose to that 16th dose he reacted to today which is about 1/3000th a peanut and hopefully by then his body will handle it better, and going forward at times his doses will be doubled or even more than that and it will go quicker, and the beginning is the hardest, though reactions can come anytime- and, and, and aaaaack!!!) Yitz tried to find a pizza store local to that place because we were exhausted and hungry and spent but when he called to inquire the pizza store said, "life threatening allergy? Oh no, don't bring your child here! We have peanuts in the sushi and there's the chance it got to the pizza. Not comfortable with that risk." (so of course neither were we)- but that helps drive the point home of how what should seemingly be normal- a piece of pizza, never is when dealing with food allergies.

As we left I told Coby how proud I am of him and how brave he is and he innocently said, "I can't wait til I get to have an ice-cream cake for my 9th birthday!" (or 10th) 

When we got home at close to 7PM Coby started complaining about a stomach-ache... He had no complaints about his stomach at the office. Is it possible? Even nearly 4 hours after his last dose? Unfortunately anything is possible so while we keep a 'stronger eye' on him the two hours following a dose; side effects and reactions can happen several hours later which is why from now on we will be sleeping with a baby monitor on.

(Which of course reminds me of when I read about how someone's boyfriend fell asleep in front of the tv and she went upstairs to bed; and when she came down in the morning, he was dead of an anaphylactic reaction in his sleep. Life threatening food allergies is a scary scary world we live in.)

This is scary. This is hard. But I got to do whatever I can to protect my child. I moved mountains in order to bring him into this world and I will now move mountains to keep him in it. It may be so easy and tempting to bury my head in the sand and NOT go through with this and say 'all will be okay, he'll just avoid peanuts forever,' but in reality it is not that simple. 

It's not a matter of IF there will be a reaction but WHEN, and that doesn't even take into account that so much of life that gets closed off from him in his attempts at avoidance.

 A store bought ice-cream birthday cake is his goal. A safe and happy child is mine. Baby steps. One step at a time. Because as we all know, "a journey of a thousand miles begins with a single step."