Thursday Jun 10, 2010
Well I won't back down...
No I won't back down
You can stand me up at the gates of hell
But I won't back down
-Tom Petty, I Won't Back Down
When we left the house this morning, I asked Derek how he was feeling about things. His response?
"Bring it on."
It's hard to describe in words the range of emotions that we've felt over the past 2 days. Shock. Fear. Guilt - how did we miss this?. Bigger fear. Gratitude for family and friends. Really big, punch-in-the-gut fear. But this morning we were both of the "Bring it On" mindset. We wanted some answers and wanted to have a plan for what is to come. And I think that after a VERY long day in the medical world, we're feeling a little more confident about the direction we're heading. That direction is to wait about 2 weeks for him to get beyond this most recent pneumonia episode and then do surgery at the end of June. You always want to go into surgery as healthy as you possibly can be, and this gives him the best opportunity for the fewest complications.
There were 2 things that really made me feel better about this approach. First, the surgeon said "This is urgent, but it's not an emergency." When Dr. M talked about sending us straight from the cardiology office to the hospital yesterday, I really freaked. But it's becoming more clear that this problem has been evolving over the past several months and didn't just appear this week. We just discovered it this week, and there's a big difference. Then, later in the day, the cardiologist said "He's the same kid that he was yesterday. Don't forget that." (I of course had to remind him that while HE may be the same, WE are not. We were pretty cool, laid-back parents yesterday. Today, we're tightly-wound bundles of nerves who are spoiling their son rotten in some misguided hope of shielding him from hurting.)
Our visit to Levine Children's Hospital was better than we expected. To start with, Jay was fantastic. He's been a little toddler-esque lately, having nuclear meltdowns over the fact that we're out of Cheddar Goldfish for example. So we were expecting that lack of food + no opportunity for nap + strange place + being poked & prodded = bad news for all involved. But he did great. He's far more brave than I am.
As for what we learned, the primary goal is to save the valve that Jay has and repair it, as opposed to putting in an artificial valve. It's always better to use what God gave you than to try and recreate the intricate machine that is the heart. But after today's echo, it's looking less likely that they can save it. They gave us 50/50 odds that they can repair the valve vs. put in a mechanical valve. I don't like those odds, but I can whine all I want and it won't change a thing. They will start surgery as a repair and try to make it work. But if they can't, a mechanical valve will last somewhere in the range of 300 years. Cool statistic ... except that he'll outgrow it when it still has 290 years left. Wonder what it'll be worth on Ebay?
That was another big piece of news - this surgery, whether repair or replace, will only be a temporary fix for 5-10 years. He's got a lot of growing to do, and carbon fiber parts just don't grow. While I was saddened and scared to hear that, in my "Bring It On" mentality, I'm glad to know what to expect.
So, that's our day in a nutshell. The most immediate hurdle is that our family needs to go into pseudo-isolation to keep Jay from being exposed to any germs. We were told to use "good judgment" in deciding where he can go ... whatever that means! No daycare, no church, no birthday parties and no ball pit at McDonald's. And, to make it even more exciting, he suggested we keep Luke out of daycare as well to keep him from bringing germs into our house.
We're not sure exactly how we're going to handle that and still remain gainfully employed. Gotta keep that health insurance, you know. We will certainly have to rely on others to get us through these next couple of weeks. We have been just overwhelmed with offers of help, with love and prayers. I don't even know how to thank you all for praying for us.
Posted at 11:00PM Jun 10, 2010 by Jen Foster in General | Comments
My 4 year old granddaughter had surgery for Chiari Malformation March 31. They had to open her skull, remove bone, cut & patch the dura around the brain, singe the cerebellum and drill a hole in her C1 vertebra. There was no other choice but surgery.
The fear is not just the outcome of surgery, but knowing what they will go through. They look at everything with innocence. They are happy to see the doctors and nurses and it’s a great adventure, but you know how they will feel when they wake up from surgery and there is nothing you can do about it. It’s heartbreaking!
But kids are resilient; Makayla wouldn’t even look at the surgeon when we left the hospital. For the 6 week checkup, she wanted to take him a thank you card and they just returned from her first trip to Disney World.
So have faith, Jay and all his family will be surrounded by love and prayers. Things will get better, he will feel better and he will be the same little boy you love.
Posted by Debbie Gilland on June 11, 2010 at 03:28 PM EDT #
Whaaaat? A fast food ball pit is nothing if not cleanly.
Glad you made it through the trip okay. :-) You must feel better just having a plan. I've been thinking about you guys!
Posted by Ginger on June 11, 2010 at 07:00 PM EDT #
Derek and Jen,
We just received word of this latest news and we are praying so hard for you guys! We know that Jay is a fighter and God is able--but we know that is scary and discouraging, too. We will pray every day for God to make the repair possible and we know--50/50 is big odd to our Big God! Love, Todd and Amanda Lockyer
Posted by Todd and Amanda Lockyer on June 15, 2010 at 03:37 PM EDT #
Dear Jen and Derek,
We were so sorry to hear about Jay. Wanted you to know that you are in our prayers daily and, as you already know, prayer is very powerful. Just keep the faith and he will be just fine. You are all so strong and God will give you strength to see you through. Take care and hang in there!
Posted by Pat Miller Evans on June 17, 2010 at 01:46 PM EDT #
Praying hard for everyone involved, Jay, his parents, his grandparents and Luke's other caregivers, Jay's doctors and nurses.
Have you set the surgery date yet? I can put it on my prayer calendar. You are all very brave, and you know if there is anything that we can do to make things easier, we'd be happy to.
Posted by Erin on June 21, 2010 at 03:16 PM EDT #
We are still praying for you all. When Jay was just a few hours old, the praying for Jay every time we picked up Grayson began, and the past days have been no different and will continue... we are going through a don't put me down stage again, guess that means don't quite praying and we won't. We love you all, and being a teacher with two kids in day care, means a hug is out of the question, but call me if you need me.
Posted by Melissa on June 21, 2010 at 03:30 PM EDT #