Monday, April 10, 2017

ARGHGGHGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

I am so frustrated. It could have been worse. It could have been worse. It could have been worse. That is my mantra. It could have been worse.

We nearly didn't take Coby to the doctor today because his fever was under 101, but since it was beginning to climb and it being erev Yom tov, we went ahead and took him.

Nothing better to do on erev yom tov than spend time at the pediatrician's.

Coby got fed up after waiting close to a half hour and grumbled, "Mom, can't you just operate on me?"

It's a good thing we went to the doctor since the strep culture came back positive. When we told our allergist that it's strep, she actually grumbled.
"No, no- it's a good thing," I told her. "The doctor said by tomorrow afternoon he should be good to go!"

I thought a virus can linger on forever but 'simple strep' means in about 36 hours we can be back on schedule, but apparently I was a bit mistaken. Both fever and bacteria in the body can make dosing more difficult.

She told us to try to avoid motrin within a 6 hour period of dosing (since motrin and dosing can cause a reaction) and instead use tylenol. To give him the 100mg tonight (our dose from 2 weeks ago). If his fever is under 101 tomorrow night we should go up to 175 and if gone by Wednesday to give him the 250s again. She told us that if his fever is higher than 101 despite it being yom tov we need to call her to figure out the dosing.

"And if he gets through this week okay and is back on 250 by Wednesday, can we updose Thurday? Please? We can updose Thursday? This is already week two on 250 and he had a run of good days on 250. Let us updose?!"
"NOPE. That would not be a good idea at all."

ARGH!!! 

So now it will be THREE weeks on the 250 capsule! (with 3 days of down-dosing- hopefully not more). I know it could have been worse. We could have not gone to the doctor today and his fever could have spiked in Brooklyn and we could have lost several weeks of progress instead of just another one. We could have run out of peanut flour again, but we should be able to just get by (if those damn capsules don't shatter.)

Truth be told, I do feel a bit of relief that we have a plan to get us through yom-tov, but am soooo frustrated at the direction the last two weeks have gone.

But the harder the climb the better the view. 
We are not giving up!
Edited a couple of hours later: Fever went to 101.4. We were told we can't dose if over 101. the tylenol did not help his temp, in fact it climbed to 101.5. He can't use ibuprofen now. Paged the dr. for the fourth time today (poor woman) and she wants Coby to SKIP his dose. Again. For the second day in a row. Too risky to dose at all. :(. If he's okay tomorrow eve and G-d willing with 3 doses of antibiotics he will be at under 101, he can start at 100, have 175 on Wednesday and back to 250 Thursday. Just praying reintroducing the peanut, even at a lower level, which is still a nice chunk- after NOTHING for 72 hours prior does not bring out a reaction. Sigh. While it is nice not having to worry about a reaction yesterday or today, it will be that more stressful tomorrow. Hope all goes well and we get back on track relatively smoothly. Please G-d...

And since you gotta laugh--- the ironic thing is I was worrying about how to 'carb-up' Coby before dosing today, on Erev Pesach, without the use of matzah or bread. Guess that wasn't an issue after all...

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