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(Un) Lucky 13?

(Un) Lucky 13?

Next week we head into surgery number 13. This is yet again an elective surgery but one that we hope will better Sawyer’s quality of life. This one for us was one that didn’t take much thought. Sawyer will be getting a VNS (Vagal Nerve Stimulator) or what I like to call a pacemaker, for his brain.

When he has a seizure, they are life threatening.

Sawyer has a severe form of epilepsy, meaning when he has a seizure, they are life threatening. They are also uncontrolled with meds and hard to detect. It’s a terrifying situation to be in, not knowing if this seizure will be too much for him to handle. He is also at high risk for SUDEP, sudden death by epilepsy. Some nights, I feel like I should be sleeping with him just so I can hear any changes in his breathing. His service dog sleeps in his room with him but nothing is 100% effective in detecting seizures. 

The VNS will send an electrical signal to his brain anytime it detects a seizure. It isn’t 100% effective in stopping seizures. However, in many children it reduces the amount, length and severity of the seizure. This alone was enough for us to give it a shot.

As of right now we live life on the edge. We are constantly on the look out for a seizure and plan our lives around the “what if's”. What if he has a seizure when on vacation? Which hospital should we go to? Maybe he will have a seizure when I am up north visiting my family, how will dad handle it on his own with no support? I know I certainly don’t want to be alone when/if he ever has a seizure when Ryan is out of town. What if I don’t hear the pulse oximeter overnight and I wake up and he’s not breathing. It’s so so much to worry about. I am praying so very hard that this VNS can make a difference in quality of life for all of us.

Surgery is never easy...

No matter how many times he has been through it. It’s hard to go under anesthesia, come out of it and deal with sutures on top of that. Sawyer has a history of not doing well after surgeries. Most recently (although a big surgery) he ended up in hospital for 11 days with pancreatitis and a PICC line. The trauma alone of another surgery and sitting in a hospital room waiting is enough to cause nightmares in the weeks ahead of surgery. I do however feel strongly that although this is elective, it is absolutely the best decision we can make for him right now. I have had no second thoughts and am praying for a good outcome.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Francie Khalaf

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I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons.

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