Throughout this process, we’ve had a fair number of questions about what has happened with James. Here’s the answers to the ones that keep coming up:
I don’t get it. Is everything that happened to James because of Kabuki Syndrome or because of HLH or because of … I don’t get it?
From what we can gather (Kabuki is pretty rare), ordinarily kids with Kabuki don’t come roaring into the world quite in James’ style. In fact, a lot of kids with Kabuki aren’t even diagnosed until they are 2 or 3 years old. The precipitating event for all of this was James catching RSV at three weeks old. We’ll never know if his lungs were so badly damaged by the RSV because of Kabuki Syndrome (which is associated with immune system irregularities), but we suspect that is the case. Certainly, the HLH, Pierre Robin Sequence, glaucoma etc. etc. are all caused by Kabuki Syndrome.
So J is delayed in hitting milestones because of Kabuki?
Partly. Kids with Kabuki have delays, but there is a huge spectrum — some go on to college, while some will need significant support for daily life in adulthood. It’s pretty much impossible to tell now where J falls. But J has a double whammy, because spending months on a ventilator and in hospitals doesn’t exactly help him get ahead. We’ve done our best to keep J engaged, but there is only so much you can do within a three foot radius of a hospital bed. We’ll probably never be able to tease apart which challenges are caused by Kabuki and which are caused by the past six months, but at some point I learned to stop asking “why?” or “what caused this?”, and instead ask “what do we do about it?” The delays will be what they will be — our job is to minimize them as much as therapy and treatment will permit.
Good grief! Didn’t you have any prenatal testing? Didn’t they catch all this?
First of all, never ask someone that. It’s none of your damn business.
Second of all, sigh. Yes, we did. At a hospital that is a national leader in prenatal testing. So the relevant answer is this: James was meant to be part of our family.
Why can’t J eat?
J was able to eat at least partially by bottle when he came home from NICU. However, significant time on a ventilator pretty much ruins the suck / swallow reflex and creates a whole bunch of sensory problems around a patient’s mouth and face. J will eat by mouth again, but it will take a lot of feeding therapy to undo the damage of the last six months.
What the hell is a “G Tube”? What does James eat?
G Tubes, or gastrostomy tubes, are a small port into a child’s stomach that allows food to flow directly into the stomach. They sound scary (at least they did to me when the idea was first presented). But they actually create a very stress-free environment to help kids learn to eat, since it is painless for J and there is no pressure on him — if J can’t eat enough by mouth one day, we can make sure he is still getting enough nutrition to grow and thrive. Everyone tells us, and we believe, that J will learn to eat exclusively by mouth over the next few months, and after that we can have the tube removed, and then burn it in a crazy, rage-fueled effigy…or just throw it in the biohazard trash, whatever.
As for what he eats, J eats breast milk, baby. 100% certified Canadian Grade A. He never could latch because of his cleft palate, so I have been pumping nonstop since he was born. Most nurses look at me like I’m crazy when I tell them J is still exclusively on breast milk. It is kind of crazy, I will admit. But it was the only thing I’ve really had any control over, so I’ve kept at it, and probably will for at least a few more months.
Is Max okay? Should I call CPS?
Max is the bomb.com (ICU Dad cringes every time I say that. Which only makes me say it more). I’m going to write a separate post about the amazingness that is Max. We obviously always loved our Maxie boy, but our experience with James makes us appreciate him in a whole new way — everything he learns feels like a miracle, every day he comes bounding into my arms after a 36 hour hospital shift pulls me back to myself and to sanity.
You live in America. Your son has been in the hospital for 6 months. Are you bankrupt?
Short answer: no. Thanks to a head’s up play by ICU Dad when he selected coverage for this year, and also thanks to the greatest insurance company in the world. For serious, we REALLY dodged a bullet on this one.
So really, why did you start this blog? Isn’t it a bit of an overshare?
I keep telling people I started it because I was selfish, lazy and lonely. Selfish, because I was starting to claw the walls after endless days with J in the hospital; I needed a way to get my brain moving again. Lazy, because it was becoming impossible to try to explain to people what was happening with J on a day-to-day basis — which was then causing me to become lonely, since I couldn’t bring myself to respond to friends and family and face recounting some crazy or scary event for the 20th time.
I agree, it’s probably an overshare. After 6 months of semi-privacy, sometimes I can’t believe what I’m writing here. But I don’t want our family to become cut off. I damn well refuse to let us have anything but a happy, normal life. So I want our friends and family to know James, to celebrate him and the fact that he has survived something so improbable, and come with us as we bring our family through the challenges ahead. It is not a secret that James probably won’t be like other kids, but we’re not going to live in secret because of it.