Monday, July 18, 2016

The OR is calling

I wish it was something cool, like "the mountains are calling." 
And, I suppose, they, too, are calling.
But at the moment, the call to the OR is stronger and apparently, it must be answered. 
Proper etiquette and all.
Screw proper etiquette.

To reiterate my prior post about this surgery, this is how we all feel about it. 
Bodie's surgical date is Tuesday, August 23rd.

(As a reminder,  He will be having a left cardiac denervation, also known as a sympathectomy. Feel free to google it (really, it's loads of fun, especially when they talk about the potential side effects and complications). In simple terms, they'll be going in through his side to clip the nerves that send adrenaline to the heart. Which, in Bodie's case, is a good thing. Thanks to the CPVT he inherited from Dusk, his body sends too much adrenaline to his heart. The consequences, as we've seen with Dusk twice in the last year, are grave. So, we're doing what we can to reduce the likelihood that Bodie will have a serious episode.)

It's a summer surgical date, so we of course take it with a grain of salt (remember Bodie's Fontan was rescheduled 4 times!), but that's the date we have, so that's the date we're going with.

We're getting everything lined up now, just so we know we're covered. Popo Alan and Grandma Jan are coming out from Reno to be with Sierra that week, so we can know she is well taken care of, and she can come to the hospital and visit Bodie (thank you so so so much, Jan and Alan - we're so blessed by your help!). 

If you'd like to help, we actually could use a few things:

1. Bodie will be having a thoracotomy (an incision into his side), which will be a very painful recovery from what we have been told. He will have at least 1 chest tube, but even so, pneumonia is a known complication from thoracatomies, since breathing is so painful. To ease his recovery, we're trying to find some sort of chest support (think, like a post pregnancy girdle, but that can fit around a child's chest), to provide support to his chest while it heals, and to hopefully enable him to breathe easier. If you are a physical therapist or know someone who is who might know if such a thing exists and where I can get one, please please let me know! This is my #1 goal for between now and surgery.

2. Please pray for Bodie's emotional well being. If you can believe it, he is excited about surgery and to get to play in the playroom at the hospital. We are very lucky that he has a very positive life experience with medical things. Even so, it has been 3 years since his last surgery - that's literally was a half a lifetime ago for him. This is big for him. And the pain will be no joke. Please pray that he's able to maintain his sweet, silly disposition that he's known for - and that we'll be able to make this experience as positive as possible for him.
3. Please help us keep Bodie's spirits up. Unfortunately, in all of its "family friendly" rhetoric, the cardiac unit at CHLA does not allow visitors under the age of 12, other than siblings. Which means that Bodie cannot have any friends visit him. He's super bummed about that. But, he would LOVE cards (he's especially a fan of any cards with Legos or Teenage Mutant Ninja turtles on them, singing cards, and the dancing underwear cards (do they even still make them???)). Feel free to email me for at for an address to send them to. I'd love to get a collection to take with us to the hospital, for him to open up at the hospital, to know how much he's loved. Also, he loves videos and FaceTiming - so if you have funny videos you want to send our way, that would be awesome as well. And if you're a friend he/we know personally, I'm certain he would love the opportunity to FaceTime as well! 

3. Please pray for NO complications. Bodie's surgery is at the end of summer, just 2 weeks before school starts. We did this intentionally, so that he could really enjoy summer before being out of commission for a bit. But it also means that complications could make starting school tough. His doctors seem to think being back at school 2 weeks after this surgery is doable. But Bodie doesn't always like to do things the easy way. Please pray for the easy path to be the one he takes this time!
Please pray for the rest of the family. We're all a little uneasy. Of course, saying we're a "little" uneasy is like saying Death Valley is a "little" hot in the summer. We're a lot uneasy. Although we should be very practiced at this whole sending a kid into the OR business, the truth is that it is scary every.single.time. We love Bodie so so so much and cannot bear to think of him having complications. He is our crazy, silly, pain in our butt but we love him SO much we wouldn't want him any other way kid - and we're praying like crazy that the Bodie we send into the OR will be the Bodie that comes out of the OR.
This is hard, guys,
This is, so, so hard.
I try not to talk about it, because, well, it's just not easy to talk about. But my heart is hurting for my sweet boy.

Please pray for peace for Dusk, Sierra and I. Pray for us to daily remember that all of this is in God's hands and that we need to be practicing turning it over to Him daily. We're working on remembering it, but it's not always easy when you're facing big things like this. Of course, we DO know this, we have always known this, particularly when it comes to Bodie. But sometimes there's a little disconnect between the heart and the head. So we'll be spending the next 5 weeks or so working on strengthening that bond. Any prayers you can send our way in that regard would be much, much appreciated. (And, I guess I should specifically say to please pray for God to remind us gently to turn it over to him, not in any huge ole things like our house burning down (his response to my prayers to learn to declutter our house) or sending us another kiddo with a major health crisis (his response when I asked for him to use our family in the Sanctity of Life movement). Sorry, but it had to be said. We've learned our lesson with the big prayers. Ha!)

In the meantime, we plan to continue enjoying the heck out of summer, being so busy that we (almost) forget that we have major surgery coming up! 

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