Sunday, December 10, 2017

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

Wednesday, August 30, 2017

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.

Saturday, August 26, 2017

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.

Monday, September 26, 2016

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.

Wednesday, April 13, 2016

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!


Monday, July 6, 2015

Line Repair Serendipity

Bo has had this line since he was 20 months old. It was starting to feel sluggish and stiff and we babied it along as best we could, knowing it would eventually need a repair. His line broke at 7pm on a Friday night. Of course. But, luckily, the surgeon who placed the line nearly 6.5 years ago was the one on call.

He agreed to fix the line in his office. Bo was ready to roll before we would have even been called out of the ER waiting room. Lucky, lucky, lucky.

We are planning a family vacation, later this summer, and I am so glad the line broke and was fixed before we left the city.

Tuesday, April 14, 2015

Easter Season

As we experience our own agonies and ecstasies In-Real-Live through the neverending Easter Season, I am here to let you know that Bo is doing great.

He's doing so well, in fact, that I now have time to fret. I have time to FB. I have time to change jobs. I have time to get fat. I have time to plot out a long-term way to make amends to my body for 8-years of neglect. And I have the privilege to dream of Bo's illusory future, as if he were not a child with a devastatingly rare disease.

It's true that his growth has stalled out. It's true that he has stubbornly stayed the same height for so long, I suspected that he willed himself to not grow taller, like he is willing his ever-rotating staff of nurses not to move on, and willing himself to stay in second grade (not gonna happen). He has been the same height for so long that even his wait-and-see doctors have finally given up the ghost, and suggested we consider growth hormone treatments.

Shortness of stature isn't unusual in the 100% TPN-dependent-since-birth club. No one is really sure why this is the case. Much in the same way that no one is really sure why these kids also tend to have bone density issues. I mean, they are getting the more precise kind of personalized medicine there is. All the calcium and vitamin D and phosphorous is painstakingly calculated by his dietician, GI and pharmacist. Nephrology double checks the numbers and gives a thumbs up. Endocrinology says the short answer is, no one knows.

While it is true that Bo brought me to tears a year ago when he asked my why his little sister was the same height as he was, it is also true that he's well-loved wherever he goes, that his peers and schoolmates innately dote on him with a tenderness you wouldn't expect from a band of 7-8 year olds.

He will always be a skeptic, and fiercely committed to empowering himself. These are all attributes that will serve him well, long after I have departed this world. I try to remind myself how thankful I will be when he can advocate for himself in the medical arena. That I have given him a sword and shield, which I hope to guide him in their merciful uses.

He understands the longer days due to the motion of the heavenly bodies. He doesn't feel a connection to God in any specific way. Maybe he is so awash in the miraculousness of being that there is simply no distinction between him and God?

We have celebrated the 6 year birthday of his central line. We are making plans for summer camps, science workshops and art classes, aka Summer Jenga. We celebrate the mercies that have brought us so many todays.

Happy Easter