Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, January 13, 2012

Don't Stop Believin'

Well, it's been an...interesting...couple of weeks.

Charlie is not having the bottle. At all. He rejects it with sometimes comical force. Like, "No fuckin' way, Mom. Get that shit outta ma face.". If it wasn't devastating every time he did that, it would be funny. No, I'm being overdramatic there. I've almost become desensitized to Charlie not eating his bottle. I'm focused on the fact that he is taking his solids super well (we are on to CHICKEN. And YOGURT.) and that he won't eat a bottle forever. I'm hopeful that he just LOVES his solids so much that, when comparing the two, formula just tastes like shit (it does, incidentally). Plus, the sucking is a lot of work, and probably makes him feel nauseated. Who wants to feel like they're gonna barf?

By the way, I say I'm 'almost' desensitized to Charlie not eating because I will NEVER be completely over that. I honestly think it's psychologically traumatizing to a mother to have a child who won't eat. We create milky to feed our children, and it's ingrained in us to get them to eat. Be healthy. Grow. When a child refuses food for as long as Charlie has, it is possible to become desensitized to it. But you never get over it. And it is further proof that hope truly springs eternal, because at every fucking bottle, I think 'Maybe he'll drink the whole thing.'.

So, we tube in all liquids. We sit, for an hour (or more) and the formula drip, drip, drips into his tummy. We actually say things like 'Charlie is on the drip!' and 'It's in the tube!' (at the end of the drip, the formula flows down th clear plastic gravity set tube into Charlie NG tube, and you kind of have to help it along by holding it up. It always requires an announcement, even when it's just me and Charlie here.). We have phrases no one outside our family would understand. It's like our own little DCM lingo.

Next Friday is a Big Day. We're back at HSC, and Charlie is being sedated. We have an echocardiogram, an EKG, and a Holter (which is like a long term EKG - a snapshot of the heart rhythms over 20 minutes). Then, we have appointments to discuss the results with our cardiologist and NPs, and then an appointment with Charlie's dietician. THEN, we have to wait and make sure he can eat before we take him home. We've booked that weekend off from family and friends so we can get Charlie back on track,

Have I mentioned how happy I am we are Canadian, and that money woes are NOT part of our worry?

Anyways. It'll be a huge day, with lots of information. I am trying not to be too hopeful about the echo - the last two showed no progress and were really just run to check for blood clots in his heart. I should expect no different this time. The NPs have told us they don't expect anything -plus, it's not like Charlie is clinically showing signs of being better. We'll see, though. Even a small improvement would be reason to celebrate. I will post again with the results next week.

In the meantime, pray to your god, keep your fingers crossed, light a candle - think of Charlie, and hope for the best. And watch this adorable video of the child in question leaning how to clap.

Don't Stop Believin' - Journey

Just a small town girl, livin' in a lonely world
She took the midnight train goin' anywhere
Just a city boy, born and raised in south Detroit
He took the midnight train goin' anywhere

A singer in a smokey room
A smell of wine and cheap perfume
For a smile they can share the night
It goes on and on and on and on....


Strangers waiting, up and down the boulevard
Their shadows searching in the night
Streetlights people, living just to find emotion
Hiding, somewhere in the night.

Working hard to get my fill,
Everybody wants a thrill
Payin' anything to roll the dice,
Just one more time
Some will win, some will lose
Some were born to sing the blues
Oh, the movie never ends
It goes on and on and on and on


Don't stop believin'
Hold on to the feelin'
Streetlights people

Don't stop believin'
Hold on
Streetlight people

Don't stop believin'
Hold on to the feelin'
Streetlights people


  1. I was just thinking I was going to send you a note that I hadn't read a blog of yours lately (not that my blog is much better :))

  2. Oh, how I can feel your pain and frustration in this post. I wish you didn't have to go through this. Please feel free to send me a message anytime if you want to talk with someone who knows exactly what you are going through. Sue, A Second Heart - mom to "Bean", almost 3 YO, diagnosed with DCM at 2 MO, heart transplant at 4 MO - doing pretty wonderfully now! And no, not every kid who gets this diagnosis has to get a heart transplant - she went home on medications and only lasted three weeks before we were back in the hospital to stay...others have been home on medication for a decade or more! So, keep hope, stay strong and know that the doctors can do amazing things for these kids.