Charlie's Blog

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

Thursday, September 29, 2011

I hate everything about you

What a stupid, corny, terrible song for my title today. But it's true when referring to DCM. I hate it. I can't believe I hate something so much that, 5 weeks ago, I had never heard of. The entomology of the word is: dilated (enlarged), cardio (heart), myo (muscle) pathy (disease). Ah, so there you have it! It's just a regular old enlarged heart muscle disease your child has. Plain as the nose on your face. I hate it, more then I ever thought I could hate something. I remember one of my grade-school teachers telling us we didn't hate anything, because 'hate' meant that you'd want to kill it. Yup, turns out 'hate' is just the right word for how I feel.

Today was a weird one. Charlie barfed this morning - a hot, upset-boy barf that wasn't fun for anyone. We had to drive for 2 hours, right after, to get to our appointment at Sick Kids. Charlie had blood taken and screamed but got over it quickly, so I see it as a success. We headed up to Cardio and fed him, and then saw Judith, one of our NPs. She's amazing. We weighed him (14lbs, 6.5 oz!) and took his pulse and blood pressure (both normal, hurray!). He hadn't had a nap yet and was getting pretty schitzy. My dad came with me today (Matt is saving his sick days in case of worst-case-senario stuff), so Dad took him while I spoke to Judith. Coles Notes version of that meeting: she showed us an x-ray of Charlie's heart and it's touching his ribcage on the one side. She said he's doing well considering his circumstances. Then, I asked a question. Sometimes I wish there was no Google and I wasn't so damn curious and inquisitive and research oriented.

Sometimes I wish I didn't need so much hope to survive this.

I asked her if we could have a specific number for his ejection fraction. I am an A-type personality and I need numbers to prove that he's getting better. When we first checked into the hospital, his EF was 'about 10%'. Now, they never gave us a specific number, so we have no comparison point. However, working with 'about 10%', his echo results from last week showed an EF of 17%. I had to ask to find this out, though, and Judith quelled my hope somewhat by saying that when an EF is under 20%, it can go up and down and that it's not stable. However, it is 'kind of' good news that it had slightly gone up.

I am struggling with this. I don't want to be too optimistic or too pessimistic, and it's impossible to find the balance between the two when you had to a)ask for the information and b)don't completely understand the information given. I don't want to have my hopes dashed at the next echo (two months away) and yet I don't want to see this as a non-moment. I just feel, in my soul, that this is good news. "Creeping upwards, never failing..." (Sidenote - isn't there a poem about that?). I just can't think that it's all bad news. So I am taking this as good news, for now.

I hate everything about you - Three Days Grace

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Every roommate kept awake
By every sigh and scream we make
All the feelings that I get
But I still don’t miss you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Only when I stop to think
About you, I know
Only when you stop to think
About me, do you know

I hate everything about you
Why do I love you
You hate everything about me
Why do you love me

I hate
You hate
I hate
You love me

I hate everything about you

Tuesday, September 27, 2011

Good day sunshine

I'm sitting at our dining room table, relaxing with a cup of tea with the oldies station on, while Charlie sleeps and Matt reads a book. All very idyllic, if my thoughts weren't consumed by DCM and the constant worry that entails. I am trying to enjoy these moments, I really am.

Yesterday was a great day. Charlie ate a lot out of each bottle, ate all (!) of his cereal, and didn't barf. He hadn't barfed in a week! This was a new record for us. I should have known it was all going to go to shit the next day. I will say, though, that I am getting better at taking it day-by-day - I really did enjoy the good day while it lasted. I went to bed last night feeling at peace.

This morning, Charlie was still ok. Then, he didn't want his 11am bottle nor his cereal (he took two spoonfuls before making the adorable 'no thanks' face (posted below - you know that phrase about 'a thousand words'?). Then, he barfed. A small one, but still - I become so hopeful that he's going to keep everything down and use those calories. Once I got over the initial clean-up, though (this one didn't even require a change of clothes on either of our parts!), I realized that there were other reasons he might have gotten sick, including the tube going too fast, or the water we use to syringe the NG tube afterwards might have been to fast, or too cold, or both. In any case, his 3pm feed went well and the nurse who visited today says he's doing fine.

It's hard to take the good days with the bad ones. Obviously, I just want every day to be good, and maybe one day we'll get there. For now, though, I am willing to take the good ones with the bad no matter how hard it is - at least he is having good days! The first lyric of the below really speaks to me: "I need to laugh..."

**The 'no thanks face' is not a recent picture, so here are TWO pictures for your viewing pleasure - the second is our recent apple-picking adventure.**













"No thanks!"



Happy apple picker?


Good Day Sunshine - The Beatles

Good day sunshine
Good day sunshine
Good day sunshine

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

Good day sunshine
Good day sunshine
Good day sunshine

We take a walk, the sun is shining down
Burns my feet as they touch the ground

Good day sunshine
Good day sunshine
Good day sunshine

Then we lie beneath a shady tree
I love her and she's loving me
She feels good, she know she's looking fine
I'm so proud to know that she is mine

Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine

Saturday, September 24, 2011

Yesterday

Yesterday was a tough day, made tougher by the fact that I just wrote all this out and then when I went to get the lyrics to today's song, the entire post deleted itself. You just can't win sometimes, you know?

Anyways, I posted on Facebook that yesterday was hopeful. It wasn't - at least, I didn't really think it was. That post was more for the masses who I don't want worrying about me and I don't need writing on my wall "Is there anything I can do?". Because there isn't anything anyone can do, and that's what makes this entire situation so goddamn frustrating and sad.

So, Charlie had his echo yesterday morning and was a trooper throughout. They got all the pictures they needed. After, he needed to eat, which for anyone who knows the situation is not an easy or short process. After eating we met with the cardiologist (we have now been at Sick Kids for 3 hours or so, running on 5 hours of sleep) who told us that Charlie's heart is still 'really bad' (direct quote!) and that they haven't seen any improvement yet. I put 'yet' because they told us not to expect any improvement yesterday - it takes longer then that usually for the drugs to work. But, hope springs eternal, somehow, and we were hoping for miraculous results. The meeting with the cardiologist was a downer.

After, we met with the genetic counsellor, who explained the genetic testing process to us and got us to sign off on sending away Charlie's sample. Charlie's sample goes to Harvard (!) where 46 of his genes will be tested. The counsellor said that she does get quite a few positive results back, so that's sort of a good thing (I always think knowing is better then not knowing). If it comes back positive, then Matt and I have to get tested to see if we are carriers, which impacts future children. If it's negative, then it's called 'idiopathic' DCM, and that leaves everything up in the air. Either way, the results aren't something to celebrate - just more information to arm ourselves with. We'll her back in 3 months or so.

Lastly, we met with our dietician. We could have use a 'rah rah' sort of meeting, but instead it just seemed very blah - yes, he's gaining weight, he's kind of catching up, oh good he's taking some cereal - again, it seemed there was nothing to celebrate yesterday. And we need celebrations on a daily basis.

We also went to see friends of ours yesterday who just had a baby. It was tough, but in the vein of keeping this short (yeah right!) I'll save that for another day. The new baby is a little peanut and we just loved her.

Today's song is 'Yesterday' by the Beatles, for obvious reasons.

**Update: Today's celebration is that Charlie just ate 1.5tsp of rice cereal, seemed to want it (kind of) and has kept it down (so far). Small victories!**

Yesterday - The Beatles

Yesterday,
All my troubles seemed so far away,
Now it looks as though they're here to stay,
Oh, I believe in yesterday.

Suddenly,
I'm not half the man I used to be,
There's a shadow hanging over me,
Oh, yesterday came suddenly.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.

Thursday, September 22, 2011

Tattoo

I turned 30 a week ago or so. I was initially excited about turning 30, but Charlie's DCM really took over right before the date, so I ended up just looking at it as another day (one where I got presents, of course). I had a great couple of days (my birthday tends to turn into a week or more, because of all of the family and friend obligations we end up with. I am not complaining.). For my 30th, I decided I wanted a tattoo. I got one when I was 17 (it's a treble clef on my hip/butt area), but that was when I was still living at home and afraid of my parents. :) I decided I'd get Charlie's name because, after all we've been through so far, the kid's name should be inscribed somewhere on my body.

Matt bought it for me even though he isn't a huge fan of tattoos (he says he doesn't 'get them'). He says they remind him of death, because as permanent as we think they are, they are gone when we are. That gave me pause to think - my tattoo will only be around as long as I will be, so while it's permanent to me, I can see how Matt would think of it as being a reminder that at some point, he and I will no longer be here.

I digress - the point of this entry was to put up a picture of the tat, and just say that I am thrilled with it. This is something that I will always remember no matter what happens, and the tattoo is a physical reminder of the fact that we got through this together and intact.













Tattoo - Jordin Sparks

No matter what you say about love
I keep coming back for more
Keep my hand in the fire
Sooner or later, I'll get what I'm asking for

No matter what you say about life
I learn every time I bleed
That truth is a stranger
Soul is in danger, I gotta let my spirit be free

To admit that I'm wrong
And then change my mind
Sorry but I have to move on
And leave you behind

I can't waste time so give it a moment
I realize, nothing's broken
No need to worry 'bout everything I've done
Live every second like it was my last one
Don't look back at a new direction
I loved you once, needed protection
You're still a part of everything I do
You're on my heart just like a tattoo

I'm sick of playing all of these games
It's not about taking sides
When I looked in the mirror, didn't deliver
It hurt enough to think that I could

Stop, admit that I'm wrong
And then change my mind
Sorry but I gotta be strong
And leave you behind

If I live every moment
Won't change any moment
Still a part of me and you
I will never regret you
Still the memory of you
Marks everything i do

Just like a tattoo
I'll always have you

Wednesday, September 21, 2011

Turn Me Loose

As of the beginning of this post, I have yet to choose a song for the end of the entry. I want to post song lyrics with each blog post because songs seems to really be speaking to me these days - I feel like each song I hear is directly related to something I have thought or said in the past day or so. Like, right now I am listening to 'Turn Me Loose' on the oldies station - which is how I feel sometimes. Turn me loose from all of these health issues and let Charlie be better! Turn me loose! It's also applicable because, for those of you who did not see Charlie in the hospital, 'I'm gonna get a thousand kicks or kiss a thousand chicks' is applicable, based on his flirting skills with the female nurses.

I received some blogging advice from a close friend: "Keep it short". So, todays entry will not the Biblical-length of yesterday's. Also, don't expect me to keep up with this blog-a-day stuff, either. At some point, I might run out of things to say. (Really? Maybe not.)

Today's entry: Charlie continues to grow, day by day. This week, we're hoping for 14lbs. He was at 13lbs, 13.5oz on Friday, and has been keeping the feeds down fairly well lately, so it's an attainable goal. We've been in the 13's for SO long...since the beginning of July! I am sick of the 13's. Big time. Plus, it turned out that some of those 13's for a while was just liquid and not 'true weight', which is what the lil' boy is now putting on. He's getting a little Budda belly and dimples in elbows and knees. Even his face, which has never been gaunt, is looking fatter. He kept his chubby cheeks through all of this, which is both remarkable and alleviating. Thank goodness for the NG tube.

Charlie has an echo on Friday. I'm trying not to get too hopeful about it...its not one where they have prepped us for news, and our NP has actually told us it's just a 'checkup', and that it probably won't yield much. 'Probably' is the word I get hung up on.

In other food-related news that is a bit more current, Charlie ate some of his rice cereal this morning and seemed to enjoy it. He was semi-opening his mouth and took it like a champ. We are so proud of him for the most minor things - I now understand how the parents of the kids in my classes have felt. I never understood it until now.

Turn Me Loose

Turn me loose, turn me loose I say
This is the first time I have felt this way
Gonna get a thousand kicks or kiss a thousand chicks
So turn me loose

Turn me loose, turn me loose I say
Gonna rock'n'roll long as the band's gonna play
Gonna holler, gonna shout, gonna knock myself right out
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh-ahh)

I've got some change in my pocket and I'm rarin' to go
Takin' some chick-a to the picture show
And when I see her home and we kiss goodnight
Well, turn me loose, turn me loose, turn me loose, turn me loose

Turn me loose, turn me loose I say
Yes, today is gonna, is gonna be the day
I want you all to understand, now I am a man
So turn me loose (turn me loose, ooh

Tuesday, September 20, 2011

Someone like you

Since I put in my first post yesterday, I have been anxious to post again. Writing is cathartic. I figure I'll start off with the various 'stories' that got us here. First off: the how-Charlie-came-to-be-diagnosed story.

Charlie was never a good nurser. For all of my breastfeeding, La Leche League Big Talk before he was born, I was actually releived to get the doctor's go-ahead to start supplementing with formula at 3 1/2 weeks. At that point, we thought Charlie's issues all stemmed from a lack of breast milk production on my part (in hindsight, how Grecian of us to automatically think it's an issue with the mother). I was put on a pill to increase my lactation (a pill that makes you fat and unable to lose weight, by the way!), and we were off to the races. However, Charlie's problems (not wanting to eat, being a bit of a screamer sometimes) didn't resolved. He never seemed truly satisfied. He continued to gain weight, though, and so although we were starting to think something else was wrong, it was deemed 'just the way he is'.

At his four month appointment, Charlie weighed in at 5 ounces less then a week prior. Sensing some cause for concern, our G.P. had us back in two weeks later for another weight in, which was exactly the same. For those of you who don't have kids, this is not normal. Babies want to eat, and babies gain weight hand over fist. Our G.P. then sent us to a pediatric walk-in clinic to have Charlie assessed.

At the walk-in we were paired with Dr. A. (our tough luck, as it turned out). He 'examined' Charlie - listened to his heart for a second or two, didn't undress him, and listened to our story about how Charlie was acting - and diagnosed him with GERD (Gastro Esophagal Reflux Disease). We were prescribed a pill that usually works for kids with this issue.

Obviously, the pill didn't work. We then got a liquid drug. Didn't work (we are now on week 3 with Dr. A.). Then, it was deemed a 'milk allergy' (even though Charlie has NO symptoms of such an allergy) and a hypoallergenic formula was given. Didn't work. ANOTHER brand of hypoallergenic formula was given. See where this is going? Nothing worked. And even though nothing worked, Dr. A. didn't refer us to another doctor until we asked, and told us NOT to go to the hospital because they would just 'turn us away'. Charlie's situation wasn't 'unique enough' for the hospital. And Charlie continuned to just maintain his weight - over the course of 2 months, he gained not one ounce.

Well, 6 in every million turned out to be exactly unique enough for the hospital.

So, one regular Tuesday evening, at the end of our metaphorical ropes, Charlie had a really bad evening. Coughing, shortness of breath, crying, inability lay down...the stuff of nightmares. He was actually so exhausted that he was falling asleep in my arms and waking up to cough. We decided that night that the next morning we would leave early to get to the Hospital for Sick Children and get Charlie looked at.

For those of you who don't know me, I am not one to take bullshit. In hindsight, my mother has said she can't believe it took us as long as it did to get Charlie to Sick Kids. And now, knowing what we know, I find it incredible, too, that we waited as long as we did. Alas, hindsight is 20/20.

Once we got to Sick Kids at 7am, all it took was the emergency department doing a chest x-ray (something we had suggested to Dr. A., but were denied because it would 'expose Charlie to too much radiation' (what?!), and we were literally whisked into the wonderful, comforting arms that is Sick Kids. Blood tests, an IV, an EKG, and an Echo were all given before noon. We were in our room by 3pm, given a tour of the ward, met our Nurse Practitioners (NP) and our cardiologist, and the wonderful nursing staff. We got our diagnosis, we found our what the first course of treatment would be, and our parents came down. We accessed the wifi and emailed/Facebooked all of our friends who, by this point, were worried sick.

Not unique enough, eh?

There were a lot of tears in those first days - shock, disbelief, mourning and uncertainty. For me, it was mostly the uncertainty of what lay ahead - something I still struggle with, albeit less so. I am such a planner! It's not really a gift, after all. We are OK for now though - good days and bad days, taking each day as it comes - and our families and friends have been the greatest support we can imagine.

Today's lyrics are Adele's 'Someone like you', because when Matt was on his way home from the hospital on Day 2 to get us clothes and toiletries, he heard this song and...it was an emotional moment for him. Just because it's sad and talks about losing someone - every time I heard it I think back to those dark first few days. It a romantic song, but some of the lyrics apply:

Someone like you - Adele

I heard that you're settled down
That you found a girl and you're married now
I heard that your dreams came true
Guess she gave you things I didn't give to you

Old friend, why are you so shy?
Ain't like you to hold back or hide from the light

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead

You know how the time flies
Only yesterday was the time of our lives
We were born and raised in a summer haze
Bound by the surprise of our glory days

I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over yet

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead, yeah

Nothing compares, no worries or cares
Regrets and mistakes, they're memories made
Who would have known how bittersweet this would taste?

Never mind, I'll find someone like you
I wish nothing but the best for you
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead

Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead

Monday, September 19, 2011

Charlie's happy heart?

I know, it's a weird title for a blog about a boy with a heart disease. I struggled over what to name the blog, and in the end decided on 'Charlie's Happy Heart' because he really does have a happy heart in the truest sense. He is a happy boy. The nurses and doctors at Sick Kids have told us time and time again that they have seen children with better heart function who are doing much, much worse. Matt and I love Andy William's song 'Happy Heart' (lyrics at bottom) and it's just such a fitting tribute to Charlie's daily demeanour.

For those of you just joining this party, Charlie (my 6 month old son) stopped eating well at around 4 months. He went to a paediatrician who misdiagnosed Charlie's condition 4 times before, after a night of endless coughing and crying and inability to catch his breath, we packed up the car for the Big Drive into the City, and took him to the hospital. It just so happens we live near-ish to the best children's hospital in Canada, one of the best in the world.

There, they did a simple chest x-ray (that's all it took, folks!) and fairly immediately admitted us and diagnosed Charlie with Dilated Cardiomyopathy. DCM is a disease that, for Charlie, affects his left ventricle, which does not pump efficiently. An average 'ejection fraction' (the amount of blood you take in versus what your heart can pump out) is about 60% - Charlie's is about 10%. It was a scary, scary day, and one I'm sure you'll hear about in upcoming posts.

That was three weeks ago. Since then, Charlie has been put on a protocol of 4 different drugs, which he may or may not be responding to. It's unfortunately too early to tell is anything is making a difference. He has an echocardiogram (echo) scheduled for Friday, when we may or may not learn more. He has a nasogastric feeding tube (NG tube) and gets some of each of his feeds through it (he becomes too tired to eat, or too uncomfortable, and refuses about half of each bottle). He is a charmer, a flirt, and fairly intelligent from what we can tell. He is meeting his developmental milestones at the late end of normal (we'll take it!) and we love him, love him, love him.

Thanks for reading this first post. I'll post about good days, bad days and exciting trips to the hospital. It's just my way of sharing this adventure.

Happy Heart, by Andy Williams

There's a certain sound always follows me around
When you're close to me you will hear it
It's the sound that lovers hear when they discover
There could be no other for their love

CHORUS
It's my happy heart you hear
Singing loud and singing clear
And it's all because you're near me, my love
Take my happy heart away
Let me love you night and day
In your arms I wanna stay, oh my love

Feeling more and more like I've never felt before
You have changed my life so completely
Music fills my soul now, I've lost all control now
I'm not half, I'm whole now with your love