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| Colorado bound |
We had no need to read any labels and Coby got ice-cream several times during our trip.
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| Yummy ice-cream! |
He was able to eat at each hotel breakfast with no worries.
Dosing was simple most of our trip. We simply dosed him in the morning before he had his rest period in the long car ride. On the day that was just too action packed we simply skipped dosing since the doctor said when needed in maintenance we can skip once a week, so that we did.
And then came Friday, his second powder dose of vacation. We didn't dose him in the morning since we knew he'd be hot and sweaty from hiking Yellowstone.
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| Grand Canyon of Yellowstone |
The plan was to dose him when we got to the hotel late that afternoon since he'd have several hours of rest with shabbos coming. It was supposed to be a non-issue.
...but instead we had a tire blow out.
We had to empty all our luggage all over the side of the road to get the spare out.
We had to wait a long time for the guy to get there to put our spare on.
We no longer knew if we'd even get to the hotel in time for shabbos, let alone have time to unpack and buy food.
We also knew we couldn't dose Coby with powder past 6PM because the later in the day you dose, the more of a chance of reaction and especially with powder, his reactions tend to be delayed by several hours.
We would have skipped dosing completely that day had we not already skipped Wednesday.
Hind-sight...
We no longer could wait until getting to the hotel to dose Coby.
So Coby carbed up, and got ready to dose in some field in the middle of Nowheresville, Montana.
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| I'm not happy about this... |
Everyone was extremely stressed already.
We couldn't do our breathing exercises or completely calm down the way we usually do before powdering. Before we started to dose he already said his stomach hurt (but that commonly happens before he begins to dose with the dreaded powder.)
I tried mixing the powder (much of it landed on my pants) into two travel applesauce packs (instead of dumping the applesauce into a bowl and really blending the powder into the applesauce) and began to dose him.
It was awful. Coby was gagging it down saying it was making him nauseaus and his stomach hurt. We chalked that up to his hatred of powder, since that has happened before.
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| dosing |
He squeezed Josh's hand as I scooped him spoonful after spoonful of the dreaded peanut powder. He guzzled down water between bites.
Coby was so happy when he was finished. The guy finished changing our tire and miraculously we made it to our hotel in time, Yitz shopped while the boys cooked and I unpacked. We made it in time for shabbos.
We made kiddush.
It was now over two hours past dosing, so I lifted Coby's shirt to check for hives same as I usually do.
He felt quite bumpy, so we brought him into the bathroom light.
There were big hives all over his torso.
We decided we didn't need to page the doctor and violate shabbos (yet) since we knew what to do. In fact I wasn't even too nervous at that time even though the hives were bigger than any we've seen in years. We still thought we had it under control.
We gave him benadryl and steroids.
A few minutes later he started coughing.
His nose was running.
His cheeks were red.
His ear was red.
The hives were spreading down his legs.
Coby started saying his throat was hurting.
Shabbos fell out the window as Yitz attempted to page the doctor.
Our call kept dropping. The name "Natalie" began echoing in the back of my mind.
Natalie, Natalie, Natalie.
Natalie the 13 year old girl who took one wrong bite, delayed her epipen by 20 minutes, then had 3 injected but still died.
"My throat hurts."
As Coby spoke, we realized how 'tight' his voice sounded. I remember reading that 'tight voice' is a sign that the throat is closing.
"Yitz, I think this is it. I think we need to do it."
Josh and Mikey held Coby's hands as I Auvi-qd him for the very first time since his diagnosis.
He screamed in pain. I think I panicked and pulled it out before I was supposed to. His leg was bleeding a little, he was crying.
"What do we do now? Do we try to page doctor? Do we wait?"
Yitz tried again to call dr. Call didn't work. This never happened before.
"I think we have to go."
"To the hospital?"
"Yes."
"Do we call 911? Where are we even? In some hotel in Montana, how will they find our room? Will they get here in time? Is this really happening?"
"I'm going to the hospital? Mom, I'm scared. I'm so scared."
In the car Coby was still saying his throat hurt. He kept coughing. He wasn't improving. I had read that if in 5 minutes first epipen isn't working OR if you're not at the hospital within 20 minutes to epi again.
So as Yitz was racing to the hospital, I opened up the next epipen and jabbed him again, this time through his clothes (which is allowed) on the leg closest to mine (not thinking at the time, that it was the same spot I had previously jabbed him and was already black and blue.)
Coby screamed. I never heard a sound like that come out of Coby's mouth before. He began sobbing.
We pulled up to the front of the hospital. I grabbed Coby and ran him into the ER as Yitz went to park the car.
Thank G-d the second epipen worked and within moments his throat was better, he stopped coughing and the hives began disappearing.
In the ER we were able to get through to our OIT doctor who helped guide us through the night and told us we were absolutely correct in epipenning Coby. She called us back several times to make sure he was okay and to remind us not to leave the hospital for at least four hours since he was at risk for a biphasic reaction.
At the hospital, they gave him more meds, hooked him up to a heart monitor and tracked his breathing, oxygen, blood pressure and pulse for the next four hours. We were instructed to keep medicating him with benadryl and orapred for the next 24 hours.
We violated shabbos when we needed to (like when we pushed the button to page the nurse when his monitors were beeping about his blood pressure being too low), but kept shabbos the best way we could. For example- we didn't watch the tv that was in the room- but instead stared at Coby and the monitors for the next 4 hours.
When they discharged him we drove back to the hotel. We couldn't walk the half mile with a spent Coby carrying our bag of stuff in a town at one in the morning not knowing where we were. We also knew we had to get Coby back to the hotel and be able to reassure Mikey and Josh that Coby is okay. We left his traumatized brothers at the hotel. I so wanted to pick up the phone and call their cell to reassure them, but they had told me they wouldn't pick up their phone on shabbos since it wasn't a necessity for THEM to do so. So I HAD to get back to them.
So we drove. Once we were back in the hotel room, Shabbos began again.
Even though we had to violate shabbos in many ways--- phone calls, carrying, driving, signatures, paging nurses, we did our best not to do 'extras'. In fact even though we did picked up the phone to speak to our doctor, I did not use that very phone to take a single picture of the entire ordeal (even though I document EVERYTHING).
Instead once shabbos was over, I took a picture of his hospital bracelets and the used AUVI Q and Epipen.
Everytime I think back to that night, I cannot believe it actually happened.
Just goes to remind us that OIT is NOT the cure. OIT makes him safe from the real world. No more reading labels, wrong bites cannot kill him. No more airborne or touch reactions...
BUT the dosing hours are still risky. If he doesn't dose in ideal conditions and follow the restrictions (no fever, baths, or exercise for several hours), reactions can still occur.
Until that night, we were lucky enough that his reactions (mostly to the powder) were only small hives.
We had our wake up call Friday night.
The doctor had us half dose him with peanuts on Shabbos and back to the full dose of 12 peanuts on Sunday. We all agreed though, that we didn't want to risk powdering him again during travel. He is able to handle the 12 peanuts mid travel.
Powder is a whole other level though.
As I finish typing up this blog 5 days have passed since that night and since his last powder dose. We are waiting on the doctor's call to tell us how to powder him up today and build back up to his original dose.
"It's not a matter of if, but when." Thank G-d our 'when' had a happy ending. Yesterday I read about one whose did not.
The following day besides some residual effects, Coby was back to his normal self and able to enjoy our amazing "Wild West" vacation. In the airport on the day we left, we saw:
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| ASS KICKIN' PEANUTS |
EDITED TO ADD: Just spoke to Dr. Selter who said maintenance dose for most patients is now 8 peanuts instead of 12, but with Coby might as well stay at 12 b/c his body needs extra protection. He wants him to have SOME powder protection but the full four teaspoons is too much for him. If Coby reacts with hives if conditions are not COMPLETELY ideal is too much and Friday was beyond too much. For the next several days he is going to build up to ONE teaspoon of powder, starting today at half a teaspoon. Today 10 and a half peanuts and half a teaspoon powder for several days, then 3/4 tsp powder and 9 and a half peanuts several days. Then 9 peanuts and one teaspoon every day possibly indefinitely but we will get back in touch about that.
