Charlie's Blog

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

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.

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