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Just a post to let you know that Owen is having VNS surgery today at 930 am, and for me to work through some of my thoughts/feelings that are keeping me up tonight…
Why VNS Surgery?
Even though the MAD diet has reduced his seizures, we hate not letting Owen have his favorite (carby) foods. We know he doesn’t fully understand cause and effect, and likely doesn’t see the correlation between food and seizures.
We also were told by the dietitian that two years is about the maximum amount of time they recommend being on the diet because of the lack of nutrients (by severely limiting fruits and veggies…).
So we need a long term seizure plan. Meds aren’t controlling his epilepsy, and with each drug that fails, he is more likely to not find one that works. Thus, we decided to go ahead with the surgery knowing it could be well over a year before it is up and running fully.
Owen has also started peeing all over everything since starting this diet–a behavior we are needing to get rid of. He seems to take pleasure in ripping his diaper apart and eating the inside of it, which is just nasty! And not good for him.
With the lack of sleep and this odd behavior, we are wondering if the diet needs to end sooner rather than later, and know VNS could help with that.
But with every surgery there is a risk. And this one seems like it may have more risks than others, especially since Owen is non-verbal and might not be able to describe side effects to us. I’m worried we may not notice them.
The good news is that VNS surgery has been successful with many AS children. We are hoping that the benefits outweigh the risks. We also have two individuals in our church who have a VNS implant, so it helped to know two people who have benefited (though they are neither children nor affected with AS).
It’s scary. And hard. Bryan and I second guess our medical decisions with Owen all the time. We regret the Keto Diet that started us down the Pica path.
Owen looked so horrible after G-Tube/Fundo surgery eight years ago that we thought we’d made the biggest mistake of our lives. And yet he bounced back from that and was finally able to gain weight. The surgery that scared us so much ended up being a blessing.
Struggling With Owen Not Speaking
We can’t talk through the surgery with Owen in a two way conversation. He can’t help make the decisions, or even ask questions about it, so we have to be his voice. It’s a responsibility we don’t take lightly, and yes–it’s really hard.
Almost overwhelming. And yet I know that we can’t keep on letting him have uncontrolled seizures. Or pee every where and eat his diaper.
So as Owen and I snuggle in the couch tonight, (another sleepless night for him so far–a side effect from the diet we aren’t enjoying…), I worry. And I read a bunch of posts on the Internet about this surgery that maybe I shouldn’t have, on the eve of surgery. I was just going by the neurologists recommendations that this surgery was fairly safe and low-risk.
But for every negative story, there were many positive ones. Many people who had their seizures drastically reduced. I don’t know–as I said before, every surgery has risks. His surgery in May (or was it April?) to have a foreign body removed from his throat was risky.
Owen has made it through so much. He’s eaten (and passed) at least a dozen socks, hundreds of rocks, and various other items that could have punctured his bowels. He has survived a nasty respiratory condition from a simple tonsil/adenoid removal surgery that left him in the PICU for a while. He over came failure to thrive as an infant.
He is a survivor!
But then I read about people who lost loved ones due to complications from this VNS surgery. And my heart aches for those families. I can’t imagine making a decision for a medical procedure that would actually cause the death of a loved one. No one would purposefully do that. And yet it happens.
We’re making the decision for VNS surgery based on what we think is best at the time. Based on what we think will provide the best quality of life for our loved ones. But those decisions don’t always end like we would imagine.
Oh the bitter curse of living in a sin-filled world. The suffering and diseases and pain that people have to deal with. That we have to deal with.
Life Is Not a Choose Your Own Adventure Novel
Unfortunately, we can’t know the outcome in advance. We can’t live life like a choose your own adventure book, where we can flip to the end quickly to see if this decision or that one was a good one. We must simply live one day at a time, doing the best we can, and praying for the Lord’s guidance.
I have to take comfort in the fact that God is in control. That He had a perfect path for our lives, no matter what the outcomes that lie ahead (in any decision, not just this one). I can trust in that. God is so good–as the chorus goes.
And VNS surgery seems like a good long-term plan for Owen. So in a few hours we will check in at the hospital and he’ll get an incision in his neck and chest (where he small device will be implanted).
Now that I’ve been able to write some of these thoughts down, hopefully sleep will find me. Owen finally drifted off–and the house is starting to cool down, so hopefully I can join him in slumber. I have a long drive soon, and cows to milk before we leave.
I’m thankful to my parents for watching five of the kids for us last night (now) and in the morning while Owen is in surgery. With Bryan’s new job, he wasn’t yet able to take a day off, and I couldn’t bring them all to the hospital. I’m thankful for the help we get–many thanks Mom and Steve!
I’ll take pictures of Owen’s scars later, and try to get an update out while he’s in recovery. It always takes him just a little longer than normal to wake up fully.
We would appreciate your prayers for our family. For Owen. And also for Bryan and I as we make decisions for him. For wisdom. Life with an Angel (child with Angelman Syndrome) is a challenge!
Thank you much!