Tuesday, February 7, 2012

BIG Plans for CHD Awareness Week

Today marks the first day of CHD Awareness Week (February 7-14), the week where the focus is on our special CHD babies. I had BIG plans for what to put on my blog. Well, to be honest, I had plans to make plans to do something big. But I never got past the plans to make plans. Ugh. Honestly, life is just a little crazy right now. I'm in one of those seasons where I find myself saying on a regular basis "Just keep swimming. Just keep swimming." I'm swimming in half done projects. I'm overcomitted and overscheduled and overwhelmed at the moment. So, I'm scrapping the big plans. I will have a special post about HOPE for our CHD babies one day this week. Or at least I plan to. :-) So stay tuned for that.

In the meantime, I do want to share this. The picture is graphic, so be prepared (just skip over it if you have a weak stomach for medical stuff!). And I've never shown the picture on the left on the blog before. Yes, Bodie has his chest open in the picture. As is typical, he came back from the Norwood surgery with his chest open, covered in some sort of sterile saran-wrap style covering in order to allow swelling of the chest cavity. It is impossible to explain what it is like as a parent, to literally look down and see your child's heart beating in his chest cavity. I know it's heavy, but what we as heart parents go through needs to be shown. I don't want to sugar coat it. It's easy to look at Bodie now and think he's just like any other kid and sort of forget everything he's been through. Or to talk about what he went through casually, like it happened to some other kid.

But he did live through it. He has lived through 3 open  heart surgeries, 2 cardiac catheterizations, a bout with C-Diff and Paraflu at the same time, and medically resistant staph in his bloodstream. He has coded twice, requiring chest compressions one of those times. We have been told to call family before, because the doctors truly had no idea whether Bodie would make it through the night. By the grace of God, he is doing well now, yes - and we could not possibly be more grateful for that. But let's never forget how valiantly our little hero has fought to be here, doing well now. So, we're celebrating CHD Awareness week by posting this picture, and spreading awareness everywhere for CHD's. Showing what these little guys have to go through. And just how far they can come. Our son is a walking, living, breathing miracle and a testament to God's saving grace.


In addition, we're celebrating CHD Awareness Week (and Heart month) Bennett style, with at least 2 planned cardiac hospital admissions before the month is out. Yep, you read that right. ICK.

First up, Daddy. You may remember here, when I blogged last August about Dusk failing a stress test and he and Bodie having holter monitors at the same time. Well, Dusk's cardiologist ultimately recommended an ICD (a defibrillator/pacemaker). After a second opinion at USC (he's currently treated at UCLA) that was basically the same, we finally scheduled the surgery. So he's scheduled for Tuesday, February 21st. It should be a quick admission, in Tuesday and out Wednesday, but you never know. Thankfully, Popo Alan and Grandma Jan are coming out for Bodie's birthday party the weekend before and graciously rescheduled their return flight home to stay a few extra days and watch the kids for us the day of Dusk's surgery. THANK YOU!

Next up, Bodie. In the same blog entry I linked to above, I talked about Bodie's EAT (tachycardia, where his resting heart jumps from his usual 80-90 beats per minute to 150-170 beats per minute). We've been battling frequent EAT episodes since last August (thanks to the awesome full body rash/rever/pinkeye/ear infection combo that I'm still convinced he caught from the pigs at the Mid State Fair - to be clear, I'm not exactly blaming the pigs, though I do think that's where he caught it - truly, it's not their fault that Bodie was practically laying on top of them). My theory is that whatever he caught in August triggered a dormant EAT node of some sort. Anyway, we've been continually increasing his beta blocker, Propranolol, to hopefully reduce the episodes. Although it has helped in terms of duration of each episode (they're now 2-3 hours, instead of 36-48), the frequency has really been all over the place. He had 6 episodes in January alone. :-( Finally, we decided enough is enough and his card put a call into his Electrophysiologist and they put their heads together to come up with a different game plan. Although the EAT doesn't necessarily present any imminent danger to Bodie, long-term it doesn't do his heart any good, that's for sure. And the name of the game for us is maintaing his left ventricular function as long as possible. So, something needed to be done.

The solution? Try a different med. YAY! So excited to discover there is something else we can try that might work better for him. The downside (and it's a big one)? 3 days in the hospital during cold, flu and RSV season. ICK. It's pretty scary thinking about having a cardiac kid in the hospital this time of year, but truly, we can't put this off any longer. We don't have it scheduled yet, but we're trying to schedule it for the week after Dusk's surgery. We'll certainly update when we do have dates.

You know the Bennetts like to go big, and CHD Awareness Week and Heart Month are no exception, apparently. What better way to raise awareness about cardiac defects than by an inpatient hospital stay? You can't say our family isn't doing our part to raise awareness! Sigh...you gotta do what you gotta do. We do covet your prayers as we approach the next few weeks, for a smooth surgery for Dusk and an eventfree hospital stay and a drug that works for Bodie. (And if any of you are near CHLA and want to come visit Bodie and I while we're there, we'd welcome a visit - since CHLA won't let visitors in under the age of 18 at the moment (siblings included - boo), I imagine we'll be bored out of our minds. :-)

And speaking of Bodie, have I mentioned that he's almost 2? He apparently missed the "almost" part of that, because the terrible 2's have definitely started. Think I'm exaggerating? I assure you not. Here's just a sampling of what I've been treated to in the past week:

No Way Jose
(Bodie rummaging around in my closet.).
Me: Bodie, get out of my closet please.
Bodie: NO.
Me: Get out of my closet NOW.
Bodie: No way Jose!!!
Me: Did you just say what I thought you said?!? Did you just say "No Way Jose?" (I had never heard him say this before)
Bodie: Yea
Me: You do NOT say "No Way Jose" to your mother!
Bodie: (pauses a minute and then looks up at me, all fiery determination) "NO WAY JOSE, MOMMY DADDY!!!"

Bodie Do
Bodie had a head-down on the floor, screaming fit for 2 minutes yesterday because he wanted to take his socks off all by himself ("Bodie Do! Bodie Do!") but yet is not physically able to take said socks off himself. This scenario is repeated approximately 9,999,999 times a day, with socks, pants, shorts, shoes and sweatshirt. Fun times.

Potty Time
Bodie started potty training himself last week, totally out of the blue. Utter craziness. Today, sitting on the potty...
Me: (noticing he had been sitting for awhile and the bowl was still empty) Bodie, where's the pee pee?"
Bodie: I dunno (yes, seriously, his newest phrase is "I dunno" - I thought I had a good 11 years before hearing that one)...walking?
Me: Your pee pee went for a walk?
Bodie: Yes.
Me: Where?
Bodie: I dunno (thinks about it for a minute)...shopping!!!

Home Depot
This kid is OBSESSED with Home Depot. Doesn't matter where we are or what we're doing, if you ask him what he wants to do  next, the answer is ALWAYS "Home Depot!" And he literally jumps out of the carseat every time we drive past our Home Depot (on the way to therapy and TWISP, so we literally drive by it 8 times a week), screaming "HOME DEPOT!!! MAMA! MAMA! MAMA! HOME DEPOOOOOOOOOOOT!"

MIIIIIIIIIIIIIIIIIIINE!
Does this one really need any explanation? I hear this 100 times a day. Basically, anything that he sees, thinks about seeing, has ever seen (or even imagined seeing) or wants to see at some point is HIS. Doesn't matter whether it's my car keys (which, sadly, he has just discovered, can make the horn go crazy at the press of a button), my water bottle, Sierra's dolly or Dusk's golf balls. Fun times.

WHAT?
Anytime I call his name, his first response is always "WHAAAAAAAAT?" The attitude dripping off of it is really quite indescribable. :-)

Life with a 2 year old - ain't it grand? That's ok - as long as he keeps giving me hugs, kisses and snuggles, I'll take all of the abuse any day. Love our little warrior! Oh, and Happy CHD Awareness Week!
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4 comments:

  1. Bodie is too funny! I love all of his little stories! Ha! I thought we were doing a little better with the 'terrible twos' but about two days ago they hit again...hard! Whew. But like you, I'll take it any day as long as I keep getting hugs, kisses and snuggles. :)

    You all really have a lot coming up soon. We'll definitely be praying that everything goes perfectly for all of it!

    Hugs!!

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  2. Oh Bodie. You absolutely precious fiery little boy you. Love it!! {{Feel your pain though Amy}} I will be adding all of you to my prayers and that all the procedures for the hubby and Bodie go well.

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  4. He is just the cutest thing - and such a little miracle :-) your stories cracked me up!

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