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!

chapter 2...

The ENT was so in love with the kids, she took pictures of their big cheesy smiles before getting down to nitty gritty. Who knew she'd be obsessed with the batmobile and Ahn would waltz in with her batman T and cape!

The good news is that, "it's not some scary, weird cancer." I love to be able to quote a surgeon in words that give so much relief and make total sense. The bad news is that Bo may be facing surgery to remove his adenoids. Tho, anyone in the know, will know that this is about as quick and routine a surgery as they come. It's the '70's version of our new millenial ear-tubes surgery.

As I was putting him to bed, we went over the clinic visit and the very probable surgery. Bo got a little misty, which I found perplexing, although not quite as strange as his not having followed every word of the clinic visit. For a guy who has memorized every word of every book he has ever read, and who spends so much time eavesdropping on my conversations, he pretty much zoned out at an appointment that was both FOR and ABOUT him. Sigh. Thanks, 6-year-old-obsessed-with-fart-jokes brain.

So we talked about some basic facial anatomy, about the brevity of the procedure (it helped that we've read "What do people do all day" a zillion times, because I was able to reference the pages where the rabbit family goes to the hospital and the bunny gets her tonsils out- which aren't the same as adenoids, but close enough to satisfy Mr. Bo), and about how his sister has stinky feet. That got some big laughs. Then I turned off the light, Ahn fell on her head and cried, and everyone went to bed.

The end (:

Sucker, Punch.

I'm sure it wasn't there long. My kids are used to my constant hugs and caresses. They brace for impact when they hear the door slam shut as I enter the house. So, I'm sure that lump on his cheek couldn't have been there more than a day. I noticed it on Saturday. It seemed bigger on Sunday. He winced as I palpated it, to check if it was hard, lumpy or immobile (all really bad things). It was none of those things.

But it was tender, and seemed to be getting bigger. So we called for an appointment Monday, saw the doctor today, got referred to the otolaryngologist today and added an ultrasound of his cheek to his already scheduled radiology appointment on Friday. I'm hoping the specialist can see us sooner rather than later. Because all I can do while I'm working on the Company's most important Application is weep silently in my cubicle.

While it's true that we don't know what it is or what Bo will have to endure, it is also true that I am prone to catastrophic thinking (because, why the hell not?). And anyway, who doesn't like a good cry? So now that I've been sobbing, weeping and leaking tears for hours, I think I will collapse into bed.

Pray for me (selfish to ask for me 1st, but hey, Lent doesn't start for a whole 'nother week!), pray that Bo's cheek lump resolves without intervention, pray that my spouse can put up with all my weeping, pray that Ahn decides that the last year of potty training was not a joke.

But hey, Bo's line turned 5 this week! so we went to see the kids' 1st run theatre movie (LEGO movie) to celebrate. We all loved it! And having such a fun, refreshing weekend definitely put me in a power position when faced with this new plot twist. Now, for bed.

Merry Christmas, Happy New Year and Happy Year of the Horse (a little in advance)!

When I am struggling with fear, uncertainty and pain, I remind myself that the person whose body is affected with a life threatening condition is my child. It takes my breath away. But before I discount my own pain, dismiss my ability to understand what my son or my daughter are experiencing or the excruciating discovery how this disease impacts our lives on the daily, I want to share an embarrassing moment, I know everyone can relate to.

There were no conference rooms available, and I had the misfortune of quiet morning with my coffee, Pandora and laptop destroyed by meeting invitations. They piled into my calendar with silent efficiency, one after another, back-to-back. But it was snowing and short notice. So my boss and I hastily regrouped in our senior director's office. She was out sick, and her office had a door. But this meeting had been called by a scientist, and she had forgotten to send a dial-in number. So I tried calling the conference room. At this point, we were 12 minutes into a 30 minute meeting, and I had another meeting lined up. So I called IT for the number. After more minutes of back and forth, she still could not find it. I spent a few minutes asking WHY WHY WHY she couldn't find it, after which, my gentle giant of a boss started pacing. After a pause he quietly stated that he did not understand why I would speak to anyone in that tone. And as the thoughts of protest formed in my mind, I flushed with embarrassment. There is really no excuse for poor behavior.

Horrifying.

Yep. Never too old to learn. Not even a simple lesson I thought I had nailed. Nope. Never too old to fail.

So, you got that one, right? See, putting yourself into my shoes isn't that hard.

So when Bo decided he wanted to participate in the Children's Christmas Eve Mass, I did not say no. Having a little skin in the game builds empathy. And practicing Active Love, only means he will get better at being an Active participant in our church family, and the greater World Family. After a long day of celebrating and the excitement of reading Prayers of the Faithful to a packed parish, I was a little sad to see how exhausted Bo was, but not overly surprised.

We hustled the kids to bed and started frantically wrapping gifts. We were scheduled to fly out at 7AM, and were looking down the barrel of an all-nighter. But by this time Bo was thrashing around, moaning in pain. And it went from the most beautiful night of my sweet boy leading our parish in prayer, to me on my knees, praying he was not being attacked by bacteria in his blood stream. I took his temperature, cursed myself for not having a blood pressure cuff in the house, and took his temperature again. We made the call to stay home at 2AM. He was in pain, and we were not going to travel under those conditions, clinical signs (all normal) be damned. Turns out, he had a massive ear infection that burst the ear drum on Christmas Day (Oh, Merry Christmas to you, too).

But the miracle, the Christmas present that no one counted on, was that even though we had to cancel our trip, we would celebrate a cozy Christmas at home. The kids would get to their stockings on Christmas morning. And Bo's every morning vomiting would stop. Just. Stop. Whatever it was that changed (there were several changes that the doctors prescribed all at once in the interest of managing Bo's pain and stabilizing his blood chemistry), he has been emesis-free for the longest period of time in three years.

So let's break it down. We cancelled our trip to Disney (boo). Bo had an ear infection (boo). We went to Brown Couch after all (yay). We got to celebrate Christmas at home (yay). And my son volunteered to participate in Mass (double yay). And after all the dust settled, Bo's vomiting has ceased (oh, please! Let's all Praise the LORD!!). I'm most grateful for something that most parents will never ever experience (daily vomiting), which seems foreign, until I tell you that it's like potty training. You spend years wiping someone's rear-end, every day (in fact, multiple times a day). And then one day, you realize that you are doing it less. And then not at all. And you are all about Praising the Lord! See? Not that hard to relate to.

And while we're on the topic of eternal gratitude, I'm reminded by actively participating in a Facebook support group, that Bo's Omegaven status, his private duty nursing, and the school nurse hired to shadow him are incredible gifts. There are kids out there who don't have any of these life-sustaining medicines or support, not because they don't need them, but because they don't have the same resources that we do (my job's private insurance, my state's Medicaid Waiver, our school district's awesomeness). So if you've read this far, or have been following us all these years, please join me in sending a prayer, or positive vibes to the Great Universe, or meditating in Peace, that the other kids who need love, support, nursing and Omegaven get all those things and more. We couldn't do it without you.

PS, as shout out to the Save the Waiver (Illinois)! The Medicaid Waiver was SAVED and medically fragile kids can continue to receive private duty nursing and support at home.