Camp!

It is not lost on me that Bo was only at camp for 6 days and 5 nights. That he was in a cabin of 7 boys and 3 counselors. That their cabin had their own nurse. And two fully accessible bathrooms with 6 toilets and 4 showers. It is not lost on me as we are watching the news reports of babies and children who look enough like Bo that I start to shake.

I spent those nights fruitlessly wandering my quiet home. With not enough to do and wondering what I was forgetting. I considered several courses of action:
1. I should "accidentally" facetime the medical director
2. I should take an "evening drive" to camp (2 hours away)
3. I should get a drone with a camera and fly it there

Needless to say, each suggestion was met with a firm "no" from my spouse. And between my exhaustion and my better instincts, I did none of those things. And despite his original skepticism, he was delighted with Camp, and is determined to return next year!

Alibi

I don’t like posting about me, so that’s my excuse for not updating. My next excuse is that Bo has been fairly stable, which is also mostly true. And my made-up list of excuses could go on.

The real reason I haven’t updated is embarrassment. And confusion.

I was on an unplanned 8 month sabbatical when my last position was eliminated in December (right after that last post, actually, almost a week to the day). I won’t feel too sorry for myself, as the circumstances provided for a lump-sum severance, which is definitely better than a punch in the nose, and COBRA.

Since we live in a rust-belt city, the cost of living is blessedly humane, and between the severance, unemployment benefits and COBRA, we were able to keep things afloat. Always take advantage of unemployment benefits; as a working individual, you’ve been paying into that system with every paycheck, so if you find yourself suddenly downsized, it really is there for you. I know I’ve been paying into this pot for the last 22 years, at least.

The other fun thing that happened, was that I went septic twice, during the year, the second time 10 days after the downsizing fiasco.

So my head wasn’t right. My stress was high. My body was making the panic hormones. I think I went a little crazy. I spent a lot of time on prayer, meditation, introspection, therapy, and binging Brooklyn Nine-Nine.

I’ve finally started working again. We didn’t have to move. Omegaven* was approved (FINALLY!). And Bo started middle school.

*I had to look it up myself, just to prove it to myself that it is approved. Go ahead, go to drugs@fda.com and search “Omegaven.” I’ll wait. Chills, right? Also, don’t get too excited. It’s not on any of the insurance company's formularies, yet. Fresenius Kabi is still negotiating a reimbursement rate with each of the carriers. I’m hoping this is finalized and in the formularies by January 1.

Bo is in orchestra and drama every day. He’s been walking home on his own, most days. We got him a dumb phone that he texts me, letting me know his whereabouts. He can tie his own shoes (finally). He did develop a touch of tachycardia (so he’s wearing a heart monitor for the last 2 of 4 weeks). But all told, it was a medically uneventful summer.

Both his nurses from elementary school have followed him to middle school. They have their own teachers’ room at the back of the computer room. I sent them a beanbag chair for Bo and a gift card to decorate.

What I realized through each of those uncertain days, and today, is how very lucky we are, and how very grateful we are to have Bo, as he is. We summoned him into this world. And even though his physical body incubated inside my womb, his development and existence made a new creature of me- I did become a mother.

And I can unequivocally say that this iteration of my self is an improvement on the last version. I still don’t have a purpose or direction. I am definitely fluffier and older, a bit wrinkled and lumpy, maybe with some bits glued together or pieces clumsily duct taped in place. A bit worse for the wear, shall we say. Maybe not even really any more motherly than I’ve ever been. But maybe more empathic, kinder, less harsh. More capable of holding a multitude of competing opinions and feelings in both hands at once, without dismissing the other. A bit more capable of some generosity towards even myself.

Situation Normal, Both Kids Are Crying

So the dulcet tones of over-tired bickering children wafts down the stairs. I've had the epiphany that I've been septic more times than Bo: 2 for 0. In a way, I suppose I'm winning.

And it's further confirmation that healing happens at home (where I'm no longer on 24/7 fluids, and therefore able to sleep through the night).

Bo has been very stable all fall. He was invited to join the Junior Symphony preparatory training orchestra, which is a huge honor. And he seems to be doing well in school.

Ahn started brownies this fall and is finishing up preparations for her First Holy Communion. I'm looking forward to her having a little more free time, once Catechism classes end in the Spring. It's mind-blowing how busy these little dudes are, already!

We've had our first real snow, and I'm delighting in the quiet on the street, and the brightness in the air.

Off to hook up TPN. 'Night 'night

Earning my Keep

This week, I've been earning my keep.

The good news is that Bo's appendectomy was as textbook as they come, and he came home Monday night, the day after. The Surgeon was sheepish when he relayed it's prophylactic removal. I was relieved to have it gone, even though we now know that he had Mesenteric Adenitis (inflamed abdominal lymph nodes from a presumed virus)- this apparently often looks and feels like an appendix about to burst.

There is no bad news. The doctor was preparing himself for an upbraiding when I found out that the surgical intervention was not necessary. But I was relieved and happy. I'm not going to miss an appendix that has no essential (it probably has a function, but we obv live pretty ok without it, and also risk having it explode for no known reason) function, and whose random rupture in a kid with a central line would literally threaten his life. So, no downsides today.

Bo remains a bit sore, but as luck would have it, it's the same surgical site I had with my hernia repair a few short months ago, so I can totally empathize with his recovery. He's taking it easy, rest assured, gentle reader.

Silence is Golden

The last year has been one of extremes. We've had the joy and exuberance of Bo's Make-A-Wish trip in February (an amazing Star Wars/Disney cruise in February), and the fear and anxiety of medical misfortune (both literal and existential): line break & repair, off-the-chart pain/possible appendicitis, and possible loss of Medicaid (the threat of ACA repeal), and all the wonderful, annoying, whining, mundane days in between.

My personal goal for the year is to not let this garbage-fire of an administration drive me back into the arms of high blood pressure medication. This seemed like a low bar last summer, but the intervening 12 months have suggested that I might not actually be able to keep this status. We'll find out in a few weeks, when I see my family doctor.

As I sit in the family room on the pediatric floor of our local hospital, waiting for Bo to feel well enough to convince his surgeon that he is no longer in the danger zone, I remain grateful. This kid starts 5th grade in the fall. This kid has 6 specialists following him. One of the specialists admitted that he broke out into a cold sweat when the ED called saying they were out of ideas.

This is the first unexpected over-night admission in 5 years. It's been a pretty good run. I'm ok with it. We do everything we can to stay out of the joint. But when a kid tells you he's scared for his life because the pain is so unfathomable, first you admit defeat, then you thank God that the ED is only 1.7 miles from the house. When that same kid has only one complaint 5 hours later, that his iPad is out of battery life, it's time to start plotting an escape.

The doctors and residents wonder out-loud if I'm a medical professional. The nurses admit relief that I'm going to make their shift easier by being the DIY-mom. The sibling and spouse fall exhausted into their own beds, waiting to be reunited.

Stranger Things, IRL

Bo wanted to go to Hawaii, so we went to Hawaii. A week into his COBRA ending. So he had a new insurance company, a new infusion company, and ten thousand miles of travel during the transition. I'm a great planner.

Also, sand. He hates sand. I did mention that we were going to an island in the middle of the ocean, on the equator, where it would be hot, sunny and sandy. All the things he hates. He still wanted to go. So we went.

Before leaving, the new insurance company called me to warn me that Omegaven will never be covered by our plan, and that we won't even have an opportunity to appeal the denial. So when we got home to our dwindling supply, I saw their letter and shoved it to the bottom of the pile. We got home the Sunday before Labor Day, and school started on Tuesday. We had two whole days to transition six time zones. Did I mention what an awesome planner I am? For grown-ups. I've only been wrangling children for 10 years.

What? Anyway, I digress. So I opened the last letter on Labor Day. It was an approval of Omegaven. By the new insurance company. I had already made a clinic appointment in Boston for Bo, and purchased airline tickets for him and his dad. And now we would need neither. A shocking and incredible problem to have. 

But believe me. I did not cancel a damn thing until I had confirmation that our infusion company had his Omegaven within an hour of the house.

So we had a great summer, and awesome vacation, and now we have Omegaven being delivered to the house again.

I did cry, cuz, duh. But also because it was actually unbelievable. Like everything else about this kid.

Rounding the Bend

Bo's line had a good long run: 6 years, 10 months, 2 weeks and 2 days. But who's counting? Amirite? The last 13 months, his site had developed unrelenting granulation tissue. For the uninitiated, and the wary, it's a lot grosser and more disturbing than it sounds.

skip ahead or stop reading (trigger warning!)

Granulation tissue is when the skin finally says, I am not into this. And then it gets all weepy, red, irritated and acts infected, even if it is not. And it's a case of self-fulfilling prophecy, if the skin isn't constantly being monitored, cleaned and basically babied within an inch of its life.

By the time I was ready to fly the white flag of surrender, I knew he would have to get a new line. As soon as I admitted that looking at my son's site was so disturbing to me that I could no longer change his dressing, let alone assist in a dressing change, the surgeon looked me in the eye and said, "it's time to schedule a new line."

Because we have heard of lines that were so old, they fell apart inside the child upon removal, we knew that this procedure, as routine as it was being painted, still held the possibility of the worst case scenario. So for the month of November and December, I was a weeping, nervous wreck. The surgery was scheduled for New Year's Eve. We had to make sure he stayed healthy, or the surgery would have to be rescheduled, and he would only have a long weekend to recover, before school resumed from Winter Break.

As an aside, it should be noted that no one in this family besides Bo had ever undergone surgery until about a year ago. Although I did give birth to two full-sized babies, I did not take any medications for their births. So it was both lucky (so I had the experience and could relate to Bo's recovery needs better) and unlucky (for the pain, duh) that I had infected kidney stones last fall. That required stenting, twice, as well as surgery to remove the stones (litho-something). And after I was discharged from the hospital I resumed work, whereupon I noticed that my brain had stopped working.

The nurse reminded me that I had massive amounts of narcotics in my body whilst enduring the procedure, and that it can take as long as a month to purge the after-effects!

So when Bo was forgetful, or emotionally fragile a few weeks after his line replacement, I fully understood where his head was.

And, we were so grateful that the surgery too the best case scenario course. Not only did the old line come out in one piece, but the surgeon was able to replace that line "over the wire." In normal English, that means he did not have to make a new insertion, Bo did not lose that site, and all that remained was to bring the end of the line out through a newly created site, and close up the old site.

We have all recovered well from this procedure, and I am delighted to say that his new line is robust and his new site looks great!

PTL!