The Unreality

Spoiler: Everyone is OK!

I've been getting run down, so was in bed immediately after putting the kids down. Roughly 8pm. I went to bed that early the day before, too. Felt yucky.

Suddenly this loud whooping seal-like barking erupts in the middle of the night. It is not coming from me. Is it a seal? It is not? Is it Jose? It is not? What is it? Who is it?

Bo: Be quiet!!!!!
seal-barking! and loud crying
Bo: Be quiet!!!!

Oh. My. God.
It's Ahn.

She is crying.
She cannot breathe.

All the lights, I run her into the bathroom. Maybe she is choking? I sweep her mouth, but only retrieve saliva. And loud sobbing wracked with the seal-barking. It will be faster if I drive than if I have to wait for 911; we are literally half a mile from the fire station.

I run out to the car. With Ahn in my arms. Jose throws her shoes and coat at me. I am wondering how I am going to make it to the ER in the dark rain, middle of the night panic. Oh please. Don't let her stop breathing. What do people do who live far from the hospital? There is not a single spot to park. The whooping and barking have stopped. I keep looking in the rear-view mirror and calling her name to make sure she is still there.

We run into the ER. I can barely sign my name. I am trying not to cry. I don't want to put her down on the scale, but they need her vitals.

Nurse: It's croup. It just sounds scary.
Me: uh-huh (thinking: that's a _thing_? it's like saying someone has consumption. that's still a thing???)

15 minutes later...
ER doc: It's croup. Two of my five kids had it. Some cold air is all she needs. Just have her breathe in the air of your freezer if it happens again. The steroids should do the trick, though.
me: ok (thinking: when the hell did you have time to have 5 kids whilst in medical school and residency?? You have a haircut and look actually tidy, how is that possible???)

15 minutes later...

Jose: you forgot your phone, and your coat (hands me both)
Me: you forgot our other kid
Jose: Paul's at the house

15 minutes later...
We drive home. Ahn sleeps with her feet on my neck, all night.

This morning...
I arose early, cheerful, delighted. So relieved and happy that we were all in our beds in our home. So blessed we all arose, happy in our home, together.

GOT IT!

Yessssss!

Got a text that Bo's regular shipment will have his Omegaven, as well! Expecting delivery tomorrow morning. Whew!!!!

Easter Miracle

He [Omegaven] is not here. He [It] is  Risen [in transit].

After Critical Care was unceremoniously dismantled by Walgreens, Bo's medical supplies started getting substituted with cheaper versions and their pharmacy seemed unsure of some really basic concepts around TPN. So we decided to switch to an infusion company that many of our TPN friends use.

It is a company we have been in touch with for years, and one whose customers have been a reliable resource for me and my many questions. We spent the better part of 6 weeks working on our supply list and ironing out details to ensure a seamless transition. When the time came to switch, it turned out that the best laid plans were not sufficient to ensure Bo's Omegaven supply.

Holy Thursday was Bo's appointment at DMC (it went well). But we were also told that his Omegaven, while clearing customs, had not yet received FDA approval to leave the port authority. Many phone calls, emails and texts later, it was determined that the FDA manager had not yet assigned an agent to our case. Over the Easter weekend, we were getting hourly updates regarding his shipment, possible work-arounds, and building contingency plans. Today we got word that his shipment was approved and on its way to the home care company.

Once the chain of custody is with the infusion company, I can relax, knowing it will be here within a day.

Chapter 5: The End, For Now

The surgeon's medical assistant sent us an appointment for surgery. I left them a message that the non-surgical interventions seemed to be working. The lump is now about the size of a pea or chickpea.

The surgery was cancelled. You may return to your regular programming. The program "SPING" crashed. Rebooting Spring. This action may require additional action.

See you on the flip side!

Chapter 4: slogging through 46 days in the desert

A sweet friend from high school has a tumblr project for Lent, and pointed out, in a recent post, that Lent is 46 days. You get back to 40 by skipping the Sundays. It's so much like the 40 weeks of pregnancy. Everyone calls it 9 months, but it's really more like 10. Everyone uses the smaller number to make you feel better. It just makes the whole business seem an eternity.

So with Bo's cheek. It seems like this lump has been there, worrying us all, for eternity. In reality, it's been a month. AND, it's getting noticeably smaller. WOOT!

I can't recall if I mentioned it already, I've worked 10-12 hour days the last week, so if you're trying to message or call me and I'm ignoring you, it's because my phone drowned. Revelation: the only thing I miss about it is messaging and bluetooth headphones/music. But connectivity is a must for Mr. Bo, in the case of untoward events.

Chapter 3: spring forward

The ENT gave us a surgery mitigation plan that has a slim chance of working: aggressively pursue feeding therapy (ie oral stimulation program) to get higher rates of saliva flowing, take a course of antibiotics to get the plugged ducts less plugged, and encourage less mouth-breathing.

So far, the results are good! The lump in his face definitely feels smaller, praise the LORD! And he seems to be in higher spirits. Although we spent bedtime looking at his junior human anatomy book, per his request, discussing facial anatomy and what we think is going on with his face.

In other happier news: there are no longer frost-bite warnings, Bo's glasses came in and they look great (he wears them ~60% of the time at school), he's finally outgrown his 4Ts and some of his 5T clothes, and his bone scan shows age appropriate density (this is REALLY good).

Our long-time infusion pharmacy was acquired by Walgreens and the transition has been only "OK." The next shipment needs to be perfect, or I will unleash the screaming rage I've felt about this neverending winter on their pharmacist manager, completely unrepentantly. I'm thisclose to doing so.

I dropped my phone in the (clean) toilet. Looks like I bricked it. I can still retrieve my vm's, but I have to go through the web-widget and I'm lazy, so it might be a while.

Happy LENT, all!