Charlie's Blog

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

Saturday, January 21, 2012

Heart of gold

This entry is ridiculously long, so grab yourself a drink and get rid of kids/husbands/annoying pets/ siblings for the next 20 minutes or so.

Yesterday was the Big Day at the Hospital. The night before, I slept as little in one might as I ever have - I was so anxious, every time I closed my eyes I saw Charlie getting his echo and Dr. D giving us that 'Oh no' look. I got 3 hours of sleep, maybe. As it turns out, adrenaline is a wonderful thing, I was so...wired isn't the right word because I wasn't hyper...maybe 'aware' is a better discriptor. I was just very there for each part of the day yesterday. The lack of sleep didn't hit me until dinnertime, at which point I started crying and had to be, literally sent to bed by my husband.

So, we arrived early for our appointment - living outside the city means either leaving early and getting there early, or leaving on time and getting there late. We always leave early. We had some time to kill, so we just sat with Charlie, had a tea, Matt did a crossword and I played games on the iPad and we alternated holding and talking to the sweet boy. We checked into Sedation at 7:30, and Charlie was knocked out by 8am.As a side note: it is so funny to watch a baby fall asleep under sedation. Charlie fought to keep his eyes open, finally closed them, but continued kicking his legs for another few minutes. "Hey guys! I'm still in here! I don't know why I am sooooo sleepy...but...I'" OUT. Hilarious.

The echo was uneventful, and they managed to do the ECG before Charlie woke up. Once he was up, they had to make sure he could keep food down, so we had some formula and hung out, and once the nurses were sure Charlie was not going to hurl, they sent us to the waiting room in the clinic (same floor, our regular waiting room area). We waits forever to see Dr. D, but we met some cool people during the wait - I met a woman who had a son with a valve issue, and he was one of NINE children. She had NINE babies. NINE. We also saw new friends of ours who we met in the waiting room last appointment, who have two children with DCM, just like Charlie. Finally, they took us, two hours after Charlie woke up.

Kristen spoke to us first, answered a few general questions we had, and we talked about the option of getting a g-tube. She then went to get Dr. D. Matt and I weren't totally sure about a g-tube for Charlie. A G-tube is like his NG tube in his nose - NG stands for NasoGastric, and a G-tube is just the gastric part because it just comes right out of your stomach - no Nose required. Obviously, though, this requires a small surgery. Dr. D was totally sold on it being a good idea for Charlie, so we've been put on a list to meet with the G-tube team and discuss it with them, and set a date. I think it's kind of a done deal, but there's a waiting list and a bit more paperwork to do first.

Anyways, the crux of the day: the results of the echo. The last 2 echos were basically just to check for clots - there was really no chance that Charlie's heart would be better because he hadn't been on the meds long enough yet. Matt and I got the impression, though, that this one was different. They wanted clear pictures (hence the sedation) and they wanted a good look inside. Matt and I know nothing about Radiology or reading ECGs, but both of us thought separately that Charlie's left ventricle looked smaller, and that his entire heart had a more regular, rhythmic pulse to it.

Dr. D. told us that "Charlie's heart shows some improvement in function." She and Kristen then smiled and look positively hopeful. They both look relieved, to be honest, and said that there should be more progress at his next echo in March. His heart is actually doing well enough that they debates taking him off his daily injections of a blood thinner, but ultimately Dr. D decided it was better to keep him on it until March, just to be safe. This was the drug that they told us in August was temporary, but to expect him to be on it until he was at least 2. Charlie is clearly exceeding their expectations.

After the Good News, we spoke to the dietician, had lunch,and came home with a weirdly one-minute-hyper-the-next-asleep psycho boy.

I don't know how to deal with this news, so I am trying not to deal with it at all. I don't know if I should be elated (I am), scared (I am), anxious about the next echo (I am)...I don't want to be too hopeful and then get crushed at the next echo, but I also don't want to treat this like it's nothing. He has gotten a teeny bit better. He is responding to the medications. I am hopeful, but I am also not thinking about it much.

Oh, and the not eating thing? Dr. D says its behavioral. "Keep on keeping on" was the message, and apparently once he has his g-tube it will be better, and easier. More for the adventure. I said to Matt tonight that I have just gotten used to this new normal and another one is around the corner.

Sorry this entry was long - enjoy the song. Thanks for your good thought, prayers and wishes. All the positive energy that surrounds Charlie is helping him, and us, through this.

Heart of gold - Neil Young

I want to live,
I want to give
I've been a miner
For a heart of gold.
It's these expressions
I never give
That keep me searching
For a heart of gold
And I'm getting old.
Keeps me searching
For a heart of gold
And I'm getting old.

I've been to Hollywood
I've been to Redwood
I crossed the ocean
For a heart of gold
I've been in my mind,
It's such a fine line
That keeps me searching
For a heart of gold
And I'm getting old.
Keeps me searching
For a heart of gold
And I'm getting old.

Keep me searching
For a heart of gold
You keep me searching
For a heart of gold
And I'm getting old.
I've been a miner
For a heart of gold.

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

Wednesday, January 4, 2012

Proud Mary

A new year, a new perspective, a new situation.

Charlie continues to struggle with eating and is beginning to show signs of having figures out that he doesn't HAVE to eat. While he was sick he didn't eat anything for two weeks. It doesn't take much to get from that to the realization that the food must be getting into him somehow, and it doesn't have to go through his mouth. He occasionally takes some by mouth, but it's looking like we won't get up to where we were before his illnesses. The good news, though, is that even when we tube in a whole bottle, he doesn't throw it up! I don't know what changed, but all of a sudden everything is staying in and he seems much more comfortable while 'on the drip' as we call it. I'm grateful for those kinds of things.

As for me, I'm doing well. The new perspective thing is mostly just a change in me - you get in a situation like this and things that really bothered me before don't bother me at all. There just isn't time to get angry at people, or judge them, or decide they can't change. I think it's made me a better person, to be honest. Just more patient, more caring. I hope so, anyways.

So, Tina Turner's 'Proud Mary/Rollin' on the River' today, partially because I love that song, and partially because I feel like that's what we are doing right now - just chugging along with this new normal and heading downstream to the unknown.

Happy New Year.

Proud Mary

Y' know, every now and then
I think you might like to hear something from us
Nice and easy
But there's just one thing
You see we never ever do nothing
Nice and easy
We always do it nice and rough
So we're gonna take the beginning of this song
And do it easy
Then we're gonna do the finish rough
This is the way we do "proud mary"

And we're rolling, rolling, rolling on the river
Listen to the story
I left a good job in the city
Working for the man every night and day
And I never lost one minute of sleeping
Worrying 'bout the way things might have been

Big wheel keep on turning
Proud mary keep on burning
And we're rolling, rolling
Rolling on the river

Cleaned a lot of plates in memphis
Pumped a lot of tane down in new orleans
But I never saw the good side of the city
Till I hitched a ride on a riverboat queen

Big wheel keep on turning
Proud mary keep on burning
And we're rolling, rolling
Rolling on the river

If you come down to the river
I bet you gonna find some people who live
You don't have to worry if you got no money
People on the river are happy to give