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

Monday, December 15, 2014

It's the Most Wonderful Time of the Year!

I've probably used that title each December since starting this blog. The sentiment remains. But, irony aside, Bo IS doing really awesome.

He had a skin infection at the site where his line exits his body. They can be serious and very dangerous if the bacteria travel into the tunnel around the exterior of the line. Because of that snug location, and the limited vascularization, if bacteria get in that tunnel area, it can cost the line, or worse.

We were very lucky that Bo is as sturdy and healthy as he is. His strong little body was able to slough it off with less occlusive dressings (sterile gauze and paper tape). It also helps that as sensitive as he is, now that he's 7, he can be reasoned with; so getting him to cooperate for showering off the site was way more feasible than it would have been at any time in the past.

We remain, gratefully yours,
Bo and family.

Thursday, August 7, 2014

Dahlias, Babies and Sleep

I prefer dahlias to roses. I'm pretty fond of a long night's sleep. I'm not competitive, but I am extremely combative. Children were a necessity, as far as my brain stem was concerned; a sunk cost in the face of cold logic. I'm pretty open to new ideas and pretty driven to do better.

In summary, I am not doing enough. And then I collapsed.

Whilst this is Bo's blog, I think it's fair to say that his cares, even when we're on cruise control, are pretty complicated. So when I'm working like a maniac, and my spouse is keeping the ship from keeling over, and our nurses are coming to take up the slack with Bo's medical needs. Eventually, all those things combine into one dramatic ambulance ride.

Since I'm obviously well enough to be somewhat coherent in the retelling, here's the spoiler: I'm home, working again, and feeling much better. The moral of the story is: I need to take better care of myself. It's such a boring and annoying and obvious necessity, I've just fallen asleep typing it. BORING

And there you have it. Bo is doing so well, that my body decided now would be an ideal time to fall apart (from kidney stones). I promise that his wellness is not an excuse for me to physically regress any further. We still have a few weeks of summer left. More family to visit. More weekends to plan. More school-year nursing schedules to figure out. More Math Camp (Bo) and Tumblebear Camp (Ahn) to attend.

And now it's time for bed....zzzzzzzzzzzzzzzzz

Wednesday, June 18, 2014


First, I would like to thank   who nominated me for the sweet Liebster Award.  The award is for the smaller blogs. Sometimes a niche is just what you need to feel like you're in the right place.
The Liebster Award is given to bloggers with less than 200 followers. The goal is to help people find these blogs that are worthy of a bigger following. In German “Liebster” means kindest, beloved, valued, and welcome.

The current rules for accepting this award are:
1.    List 11 random facts about myself.
2.    Answer 11 questions from the blogger who nominated me.
3.    Nominate 11 more blogs who have less than 200 followers and let them know they’ve been nominated.
4.    Post 11 new questions for those bloggers to answer (if they wish to accept the award—it’s completely optional).

Random Facts About Me 
1. I enjoy and excel in the humanities, which is why I majored in Biochemistry and got my MS in Microbiology
2. Endless summer (Florida, Hawaii, etc.) just seems like forced cheerfulness to me
3. I went to some very fancy schools, but the most famous person I know was a kid from public school
4. Because my parents seriously raised us 3 girls as their sons, I have never questioned my rights or abilities
5. My grandmother had an arranged marriage and bound-feet; she and my grandfather loved each other, madly
6. I minored in dance
7. There wasn't much religion growing up; I became Catholic after Bo was born
8. I didn't groom my brows until my wedding day, and only then because a friend insisted and did it for me
9. I gave myself such a severe cavity that 2 baby teeth fell out and one super-tooth grew back (aka janus tooth)
10. I wanted my father's approval, so claimed his favorite color as mine; I still don't know what my favorite is
11. I'm obsessed with real estate the way some guys are obsessed with sports

My answers  to  Jane's questions…
1.  Who is your favorite character in a book or a movie?
Wittman Ah Sing from Maxine Hong Kingston's Tripmaster Monkey because both the male energy and magical nature of a Chinese-American bicultural protagonist and his thoughtfulness resonate with my own sense of self

2.  Why did you launch your blog? 
I wanted to provide updates about Bo for our given and chosen families, and as a resource for other families, or friends supporting families of children with the same rare congenital disorder as my son, or whose children require the same therapies and interventions

3.  If you could wave a magic wand and change something about your life, what would it be?
I would cure my son's disease

4.  If you could change one decision in the past, what would it be and why? 
I would have let my son keep his pacifier as long as he wanted. Since he doesn't eat for nutrition, he has developed an oral aversion, and that in turn has led his parotids backing up with saliva. If he was still chomping on his paci, his salivary glands would be stimulated enough to produce the appropriate volume of fluid, instead of requiring more OT

5.  Who do you admire and respect the most in the world?
my spouse for patience and kindness surpassing my greatest expectations, and my parents whose loyalty and admiration for each other for nearly 50 years is truly a monument to behold, and President Bill Clinton (it would take too long to explain; maybe in a subsequent blog post)

6.  What is your biggest dream?
That a cure for my son's disease is available in my lifetime

7.  If you were stuck on an island and could only bring three things with you--what would they be?
A solar-powered desalination device, one of those never-ending graphite pen things, and swiss army knife

8.  What is your ideal vacation? 
A vacation rental by the ocean with lots of friends nearby for daily cook-outs

9.  What do you want to be when you "grow up"?
Able to fully live in my present and fully communicate my love and appreciation to each and every soul whom I have the privilege to encounter.

10.  What advice would you give your teenage self?
Take advantage of anything that provides an opportunity for new experiences, except for meanness. Being mean's only result is regret.

11.  You've just been arrested for protesting, what was it for?
Trying to access medicine, medical care, or getting in a health care professional's face for subpar care

My Nominees for the Liebster Award (although apologies if you have more than 200 followers, I can't tell!) because even though we weren't best friends when we had the chance to be, she always had an uncannily mature stick-to-it-ness that appealed to me, even in middle school, and the most magical honey-streaked blonde hair as a perfect counterpoint to an incredible intelligence. Those lucky Kiwis. she actually was my best friend (almost 40 years ago, seriously. shut-up) because she is hilarious and I want to be her best friend because of the honesty, heroism and heartbreak of parenting and chronic illness because he is so funny, I actually cry Caleigh is about the same age as Bo, and like him, is both medically complicated and super smart; her mom's pretty cool, too (I <3 designers="" font=""> meeting Mallory's parents saved both my life, my marriage and Bo; she is kicking a$$, and happens to be the oldest living person with the same condition as Bo

I can't go to eleven. Sorry Liebs.

My 11 Questions for the Nominees

    1.  Do you identify with the fish or the school of fish, and why?
    2.  Why did you launch your blog? 
    3.  If you could wave a magic wand and change something about your life, what would it be?
    4. Where are the Snowdens of yesteryear, and what is the best Snowden joke you've seen/heard? 
    5.  Do you have to be good to do good (ie does Miles Davis' art become invalid because he was misogynistic and violent)?
    6.  What do you think about the Meritocracy?
    7.  If you were stuck on an island and could only bring three books--what would they be?
    8.  What do you think about books on "tape"? 
    9.  What kind of extrovert wants alone time, and do they really need it?
    10.  What advice would you give your teenage self?
    11.  You've just been arrested for protesting, what was it for?