Thursday, November 15, 2012

Dear Son Surgery Scheduled

As I mentioned previously, Dear Son has a Vagus Nerve Stimulator (VNS) implanted to control seizures. Over the past month or so, his seizures began increasing and it was discovered that the battery was low and needed to be replaced.  Since the VNS is located internally, he'll need surgery to replace it.  The VNS is located beneath his left arm.
On Monday, Dear Son is scheduled for surgery at Big Academic Medical Center. I am a bit nervous to say the least.  He initially got the VNS in 2004 and when the battery went low in May of 2009, we had it replaced. Unfortunately, a decision was made to use heavy sedation vs. general anesthesia and when they did that, Dear Son was unable to breathe over the sedation (this is called respiratory depression). He developed a mucous plug and his lung collapsed.  You can read about it here. Once his lung collapsed, he developed an infection and eventually both lungs became filled with fluid with his left lung being totally filled with fluid and his right lung at 75%. He was in the ICU for 10 days and was hospitalized for nearly three weeks.

After that, I contacted the Make a Wish organization to schedule his Make a Wish Trip.  I worked with them and we set it up for his 18th birthday.  The night before we were scheduled to leave for the trip, Dear Son got the swine flu and a viral pneumonia. You can read about that here. He had respiratory failure and was placed on a ventilator for several weeks. He eventually recovered but all in all, it was a horrible year. Having this VNS surgery brings back all of these horrible memories. It's really hard. He's had some 70 plus hospitalizations in his life and to be honest, 2009 was the hardest ever and it's not easy to go back.
Tomorrow we meet with anesthesia.  It's my understanding they'll use a breathing tube this time and they'll place him on a ventilator while they do the surgery. If all goes well, they'll remove the tube after surgery and he'll stay there overnight (I always stay with him:) and we'll go home on Tuesday.  He'll be out of school for a few weeks until the incision heals.  We just can't be pulling on the incision and since he's not able to roll over, etc. on his own, it will make it difficult to move him around for a few weeks.
Anyway, I'd appreciate your prayers. I am trying to be optimistic that things will go well this time and I hope things go well tomorrow with anesthesia. I am going in with the attitude that everything will go well however it's a little hard not to look back. Dear Son is medically fragile and his biggest risks are respiratory depression and aspiration (aspirating his own secretions). After everything happened in 2009, I was told that he could not have any surgery of any kind since they didn't think he could make it. Unfortunately, Dear Son needs this Vagus Nerve Stimulator to control the seizures. I think the good news is that Dear Son has been hospital free from pneumonia for over 2 years now since I've been using Now Foods Organic Virgin Coconut Oil to prevent pneumonia. In addition, I've been able to build his immune system through converting him to a blenderized diet of real food. Overall, this is probably the healthiest he's been in years although he still is medically fragile and an extremely high surgical risk.
I'll try to post on Tuesday to give you an update, when we get home. I am hoping things go well. If it does, I'll have a lot to be thankful for on Thanksgiving.
Note: Dear Son is a 21 year old man who was born with intractable seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He was one of the first boys in the world to be discovered with this genetic mutation. His seizures are controlled with multiple medications and a Vagus Nerve Stimulator. He is a delightful and happy young man who lives each day joyfully; I am blessed to have him as my son.


Earl said...

As a long time reader, I agree your young man's health is better than ever. The credit is all yours. Good luck, E.

Sharon said...

You and Dear Son will be in my thoughts and prayers during his hospitalization. It sounds like he is starting out very healthy because of his new diet and your care. I hope this surgery will be a simple one for you both.

Anonymous said...

Praying for you & Dear Son that his surgery and recovery will go well. Be hopeful and encouraged that he is going into this a much stronger & healthier young man, thanks to your devotion and loving care. Dear Son is so blessed to have you as his mom!

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