Timing is everything

Sunday night our sick little Mikey insisted that I can go into work Monday and that he’d be okay- after all he is nearly 16 and is very self sufficient and should he need me, I’m just three minutes away

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We leave everything he should need (food drink and medication wise) in his room so he wouldn’t saunter out and spread the germs around (gotta keep Coby germ-free! Yep, whole OIT thing) other than using the bathroom. Coby knows not to use the upstairs bathroom except for baths and teeth brushing- and we make sure we sanitize all the places Mikey touched before allowing Coby in there.

(Coby and Mikey were so cute- since Mikey had no voice so he couldn’t talk or be in the same vicinity as Coby, he & Coby were texting each other much of the evening from floors apart missing each other. Awwww brotherly love.)

Anyway Mikey first texts me Monday morning telling me how he woke up with 102 and was coughing so hard he he was getting dizzy and thought he was going to throw up… He calmed himself down and got it together but when he tried to use the nebulizer, he realized the power was out.

WHAT?!

My sick kid cannot do his breathing treatment? My sick kid who already feels cold due to fever will now have no heat in the house?

PSEG had a message saying “Power should be back by  1:15” Okay, that's not too bad.

I texted Mikey, -"can you hang in there."

"I’m fine."

As it gets closer to noon, PSEG had a new message, “Power should be back by 4:30”. WHAT?! Another three hours?! Why? And what if they postpone yet again? Yitz tries to call PSEG and get a human on the line but was disconnected six times and never did get a person on the line.

BIG PROBLEM!

-My sick kid who was having breathing problems wouldn’t be able to use the nebulizer. 

-It’s freezing outside and getting cooler inside

- And- yep wraps right back around to OIT---- Coby’s dose MUST be refrigerated at all times since there are no preservatives at all in the solution. In fact it were to be inadvertently left out on the counter for even just 30 minutes it would spoil and be unusable. The doctor even provides each patient with a cooler and an ice pack to transport the doses back and forth even for all patients even those who live right near the office.

"How long would the solution be okay in a fridge without power and not spoil?"

“Don’t open the fridge.”

"Well I won’t until I need to dose him at 4:15--- and then what? What if power doesn’t come back on. He MUST have his dose. Every. Single. Day. He cannot miss his dose."

 I was told that most of the neighborhood lost power so I couldn’t even drop off the solution into someone else’s fridge. I also couldn’t leave it outside either since the temperature was  below freezing- and his solution cannot be frozen--- and my Mikey, it’s not like I can bring a sick kid into someone else’s home!

I told Yitz that he would have to leave early to get to the doctor and pick up a new solution because once I open the fridge and dose Coby and the inside temperature of the fridge drops and we don’t know when power would be back we can no longer rely on his solution….. ARGH!

Seriously? Why now? I had a sick kid at home, but not ‘just’ a sick kid. A sick kid who NEEDED power for his nebulizer so he’d be able to BREATHE. And what about Coby’s OIT dose. Why is this happening now? Couldn’t it happen when I don’t have a sick child at home. OR in 2 months time when Coby’s dose would be capsules and no longer require refrigeration?!

I was going to be home at around one but since I couldn’t open the fridge to give my kid lunch, I figured I’d bring him home a milkshake to help his throat feel better. Coby wouldn’t be home from school so Mikey would be able to drink it and toss the cup without it causing a problem for Coby (who cannot go to Hagen Daz…. Though if this OIT thing works…..)

I asked Yitz to call Hagen Daz to make sure THEY had power and didn’t have a melty mess of ice cream soup. Yitz called them and was told that they did indeed have power. So I went to the store and there are three guys there in front of the counter but NO ICE CREAM. What? “We aren’t open for business yet- we’re in the middle of renovations!”

Are you friggin' kidding me?

. I guess when Yitz called to ask if they had power, they simply said they did. Which I guess, they did.  But it would have been nice if they informed us THEY DIDN'T HAVE ANY ICE-CREAM!

Thankfully Mikey texted me at about one o’ clock, “THE POWER IS BACK!” Oh my gosh--- thank G-d. I tell him, “Nebulize now- in case it goes out again!”

Thankfully the power was only out for a total of about 4 hours which is doable (though much easier when there is no sick kid or dose requiring refrigeration)…. BUT when the power popped back on it fried our cable box so we didn’t have internet, home phone or  tv.  

At first we were able to still watch shows that were already on the dvr, but when I tried to fix the top box- I ended up completely frying the entire thing.  My dvr wouldn't even be recording the bachelor  L. It didn’t record my Dr. Phil either. Fios would only be able to come TWENTY FOUR HOURS LATER. (I know first world problems...)  ARGH--- the only way I’m able to fall asleep is by lying in bed and dozing off to reality tv shows. .

But I know, I know- the most important thing IS power. Power is heat. Power is nebulization which equals breathing. Power is being able to preserve Coby’s doses.

A few years ago we lost power for about 4 days---- that was NOT fun. The house was about 50 degrees inside and we couldn’t go to anyone else’s house because of Coby’s allergy. We were sleeping with gloves and hats and layered up and taking freezing cold showers

Blackout 2011

Layered up & cuddling for body heat

Brrrrrrr

So if this OIT thing works and we have another several day power outage (please no), at least we wouldn’t be so stuck in our own freezing home!

Anyway back to 2017--- Coby was not happy that he couldn’t play on his phone after dosing, nor could he watch tv. “Today was horrible!” he exclaimed because of that.

When I realized our dvr was working (for a few minutes before I completely fried it), a Disneyworld commercial came on. 

“Look Coby!” 

“That’s Disney, isn’t it?” 

“Yep.”  

“Turn that off- it only makes me jealous that I'm not there!"

“Me too- I want to go to Disney too!” 

“So let’s go upstairs and pack so we can go.” he exclaims, realizing that would be impossible.

Well out little Cobester- you may currently be clueless, but your wish is our command--- just hang on for another 12 days or so….

At least I was able to turn off wifi on my phone and get a facebook fix every now and then. Though when I did, I learned about another teenager who died from anaphylaxis. A 15 year old. One wrong bite. Now gone forever. Two men were actually arrested for involuntary manslaughter for not taking her allergy seriously in the restaurant she was eating in. So if people wonder why we do not go to most restaurants and why it is so hard to trust the outside world- well there you have it. RIP Megan.

And so we OIT…

Anyhow--- power means I have Microsoft word on my computer where I am typing this---- but I have no internet so I don’t have access to my blog so by the time you see this it will mean our internet is fixed! As I type we’re all grumbly (but thankful we have power) and bored but by the time this post gets out there- all will be well in our little abode once again.