Charlie's Blog

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

Sunday, December 25, 2011

Did I make you cry on Christmas day?

Charlie's first Christmas has come and gone. It was a day filled with all the good things a first Christmas should be - being spoiled by parents and grandparents and aunts and uncles, staying up way past our bedtime and enjoying good company all day long. I thought it would be more emotional for me - I thought I would spend the day thinking about future Christmases and where things were headed with Charlie, but, for once, I was able to live in the moment and enjoy every part of being a parent on a child's first Christmas.

Charlie got over his 'flu' as we are now calling it (the week-from-hell of not eating, crying unless he was being held, unable to sleep through the night) and immediately dove head first into a cold. When it rains, it pours. With the 'flu', we did end up taking him to the hospital, and they did wome tests (examines him blood work) and assured us whatever charlie had it was NOT heart failure related. Whew! But he had lost a bit of weight, so to keep food in him they changed his formula mix to regular strength, rather then the hyper caloric mix that is his standard. It did help him keep down his food, although the poops continued. I expect he lost a bit more weight but that it was nothing compared to what would have been the case had we not gone to the hospital and followed their advice.

So, about the cold. Who knew so much snot could occupy one little snub nose?! The poor kid can't breath worth shit, has given his dad the same cold, and is snorting and snarfing all over everything. I had to change my pajama top last night because the shoulder was covered - COVERED - in boogers. Appetizing, I know.

This second adventure-in-illness has made me so thankful we have the NG tube. He is literally unable to eat by mouth because he can't breath through his nose, so we have been tubing everything into him. He's keeping most of it down (two tiny barfs today - one, an ill-timed sneeze and the other was a I'm-crying-so-hard-because-I-want-to-be-with-the-people-so-I-puked barf) and I'm sure he's back to gaining. He is trying to eat each time we get out the bottle, and that's what's important to me.

So, second christmas comes tomorrow (i.e. the in-laws) and then we are having a dinner party on Thursday night. We go back to the hospital on Friday just to make sure we are back on the right track, and then it's really vacation time. The whole next week Matt has off (I know, us teachers are spoiled!) so we are planning on just relaxing. All in all, so far, a successful Christmas vacation.

Merry Christmas.

Did I make you cry on Christmas?/ Sufjan Stevens

This time of year you always disappear
You tell me not to call
You tell me not to call
And when the door is closed you're wearing different clothes
Or hiding in the paper, pretending not to hear

Inexpensive wine
I buy it all the time
You tell me take it back
You say you'll take a nap
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

Did I make you cry
On Christmas day?
Did I let you down
Like every other day?
Did I make you cry
On Christmas day?
Did I let you down
On Christmas day?

The bed that isn't made
The broken window shade
The radiator's on
I loved you along
But I can see it now
You always tell me how
I could do so much better
You said it in your letter

I stay awake at night
After we have a fight
I'm writing poems about you
And they aren't very nice
I didn't mean to yell
I said I couldn't tell
I only grabbed your wrist
Or would you rather we kissed?

Did I make you cry
On Christmas day?
Did I make you cry
Like every other day?
Did I make you cry
On Christmas day?
Did I make you cry?

Saturday, December 17, 2011

Two Steps Back

This has been the worst week yet, mostly because everything was going so well for so long. Perhaps this is a message from above? Some perspective?

Last Monday, Charlie woke up starving. He ate 100mLs of his 160mLs of hyper caloric formula - a big deal for someone who averages 42% of each bottle. At his 10am feed, he only ate 50mLs - fine, because that's about average for him. It would be like us eating cheesecake at every meal and being expected to finish it at every meal.

From there, everything fell apart.

Since then, he has had 300mLs by mouth TOTAL, over the next 5 days. He won't even let the bottle get near him, never mind in his mouth. He was running a light fever for a couple of days, he was being grumpy, having diarrhea, sleeping more and sleeping heavier. No one at the hospital seemed to think this was an issue - even though these changes took place, literally, overnight. On Friday, I emailed a list of concerns to our NPs, ho told me to bring him in 'if I wanted'. Well, geez, thanks for nothing. I didn't take him down, not because I wanted to give it the weekend just in case, as they think at the hospital, that he has a virus and that it'll pass. If he's not better by Monday - obviously on the mend - we are going down.

Our doctor-friend suggested it may be the fact we started yogurt and meat last weekend. I am hoping against hope that IS indeed the problem. We've cut out all solids for a couple of days, so hopefully that does the trick.

And that's the news from our world, suddenly plunged back into the depths of possible heart failure.

Two Steps Back - Craig David

You know I'm the kinda guy that does 9 to 5
Working real hard it's the way I live my life
Back home just me and you girl all alone
With no one interrupting
Switch off the phone
But I could be that other guy
Who comes home late night after night and tells you lies
So why are you trippin out, on me girl all the time
When every day it's only you that's on my mind oh

Every time we take one step forward
You take 2 steps back
Everytime it's right you bring left back (oh, oh)
Girl you really oughta think about it
Cuz there's really no doubt about it
You know I'm been there for you and that's the truth [x2]

You know you're the kinda girl that doesn't need to front
Keep it real, let me know just what you want
Sometimes I just don't know when to stop
You worry so much over nothing
You're just losing what you've got
Now can't you see there's no other girl
I think you're the most beautiful woman in this world
But you say I don't appreciate you
And I don't know how to treat you
We don't do the same thing we did no more


Remember it wasn't that long ago
You told me that you love me so
Don't forget all the nights we shared
When you told me girl how much you cared
It could be a little straight
But this is the way plays to play
I'm not that kinda man
Why can't you understand
Cause I
Want you to trust in me
Baby girl can't you see
You only gonna mess things up
You've done enough
Why can't you stop
(Cause) You're gonna lose what's good to you
And it's the last thing you wanna do
Won't find another like me, oohhh

Sunday, December 11, 2011

No Answers

Well, it's been another week. Charlie is having good days and bad days still, but the bad days are getting fewer and they aren't as 'bad' as they used to be. Partly, that's reality, and partly, that's perspective. I don't freak out anymore is he completely rejects a bottle. It's more a small disappointment in an otherwise still hopeful situation. I wish he could talk, though, and tell me why he doesn't want that bottle. Or why he threw up. Or why he's upset. Is it teething or is it his heart?

He is for SURE teething. He has all the classic symptoms - diarrhea, flushed cheeks, occasional miserable temperament, and chewing, chewing, chewing. As I said to Matt last week - "Sometimes I like having a normalish baby with normal problems." It's refreshing to NOT think it's his heart. :)

On Friday we went to Sick Kids for a checkup. The staff were all really pleased with his progress. It was a boring visit, because we just saw our NP and cardiologist, had some blood taken and went home! The next visit, though, is a huge one - sedate echo (they're going to knock him out!), Holter (a device that measure heart rhythms for a longer period of time), an EKG, and more blood work. That will be an interesting day.

Lastly, a friend of mine asked me to clarify a few things for my reading audience. Enjoy!

Q: Why is it such a big deal when Charlie throws up?
A: It's not, really. It just bothers me. He didn't throw up for his first 4 months of life, so I didn't get accustomed to it like many of my friends did. I always thought of Charlie as 'not a barfer' so when he started his medications, and started throwing up, I took it as a sign he was actually getting worse (which can happen on these medications). In reality, though, all it was was Charlie FINALLY eating enough TO throw up. He went from eating little bits to having big bottles. Plus, I'm assuming sometimes he just feels nauseated, and upchucks because he can.

Q: Tell me more about Charlie's medications.
A: OK! I feel like a pharmacist! Charlie is on:

1. Prevacid (PREV-a-sid). The least of our medications, this one is just for reflux (because Charlie has a feeding tube (an 'NG' - NasoGastric tube) his stomach's sphincter muscle is open a bit all the time, which makes it easier for stomach acid to come up his esophagus and burn him). The Prevacid makes his stomach acid less acidic, and thus less burn-y.
2. Lasix (LAY-six). This is a diuretic. It makes him pee a WHOLE bunch right after he takes it. He has to take it because, when in heart failure, your body retains fluid. Charlie's lungs were quite 'wet' when we took him into Sick Kids the first time. The Lasix is what made Charlie lose almost a whole pound in fluid when first diagnosed (which is a lot when you only weighed 13lbs, 8oz to begin with!). The doctors have recently lessened Charlie's Lasix dose a tiny bit to see how it goes.
3. Enoxaparin (EE-nox-a-pair-in, or EE-nox for short). This is Charlie's twice-daily injection. It's a blood thinner to ensure Charlie doesn't get clots in his heart because of insufficient pumping.
4. Carvedilol (CAR-vay-dil-lol). This is Charlie's beta-blocker. I don't really know what that means - just that it helps his blood pump more efficiently by blocking a protien naturally created in our bodies.
5. Captopril (CAP-tow-prill). Charlie's ACE-inhibitor. ACE is an acronym for another protien that needs to be blocked to help his heart pump better. Again, I'm not sure of the details. It's all very technical. This drug also reduces Charlie's blood pressure slightly.

So there you go!

Q: What's the deal with Charlie's feeding? Why doesn't he eat like a normal baby?
A: Good question, and a fucking frustrating one. There's no clear answer, but as Kristen (NP) put it "He doesn't eat because his heart sucks.". It could be that he gets tired easily, from the sucking on the bottle. OR it could be that because it takes blood to digest food, his body makes him feel full before he really is. OR it could be that eating makes him feel nauseated so he stops. All of these are options and we won't know which one it is (or if it's something else!) for a long time. This is also why he has to have a feeding tube - when he doesn't finishes a bottle, we just 'tube' the rest into him. He may eventually have to be fitted with a 'G' tube (Gastric), which is a small tube that runs into his stomach from his side - but that depends on how well he responds to the drugs. The friend who asked all these question referred to the 'art' of feeding Charlie, and that is just a BRILLIANT way to put it. He has to be propped up, on his back, kind of stretched out, watching something to distract him, cajoled into eating, and then sung to or something else to distract him while he is actually eating. He often put his hand in my mouth and I just let him leave it there. He runs his fingers over my teeth and inside my lips. It keeps him occupied and he keeps eating. It's such a struggle, and I'm the only one who can do it. He won't eat as much for my husband, and he won't eat at all for anyone else.

Q: What are the side-effects of Charlie's condition?
A: Well, in the short-term, we are experiencing some delays in gross motor skills (he's not crawling, although he's on his way). He is low percentiles for weight and height, so those things were probably affected by the lack of nutrition over the summer (he's catching up, though!). Other then that, long-term, we are looking at a boy who will probably be pretty skinny and not as active as other kids, and will get tired mor easily then others too. Really, nothing that is too big of a deal, to us. We just want him to be as healthy as he can be, and continue being the happy litle duck he is.

No Answers - Thursday

Can you feel it in the dead of night?
It's all around but can't be seen.
Can you hear it in the parking lot?
It only speaks when spoken to.
Can you find it in the marathon?
The more you take the more you leave.
Can you see them in a pane of glass?
You know them but they don't know you.
I can see it now:
What gets lost but never found?
What could fasten two,
Yet only touches one?
Who could make it hurt,
As much as it did before?
(You could tie a string
Around the place where it used to show.)

I can hear the ocean when I say your name..
In the yellow hem of the sea's blue skirt.
You're the last asleep on a one-way train..
It's been eight years if it's been a day.
You can see her in a pane of glass..
You think you know her but you don't.
You share a family but you don't share a name..
Some things run deeper than blood.

No answers. No answers when you're not around.

Friday, December 2, 2011

The Book Thief

Ok, I love music, but I also love to read. I am currently reading "The Book Thief" by Marcus Zusak. Thinking about grief and mourning, this quote stood out to me. Something to reflect on in the tougher times.

“The point is, Ilsa Hermann had decided to make suffering her triumph. When it refused to let go of her, she succumbed to it. She embraced it.
She could have shot herself, scratched herself or indulged in other forms of self-mutilation, but she chose what she probably felt was the weakest option - to at least endure the discomfort of the weather.”

Charlie weighed in yesterday at 17lbs, 11oz - finally double his birth weight. I am relieved and enjoying every minute with my beautiful baby boy. I refuse to be like Ilsa Hermann. I will not make suffering my triumph.