Friday, May 24, 2013

IT'S OFFICIAL


(Note: this post contains pictures and videos of medical issues that some may not want to view.)

After seizures beginning at age 4 months old…

After life-threatening infantile spasms began at 4 ½ months old…


After multiple visits to the emergency room…

…and 2 life-flights due to 2-3 hour seizures, no breathing and intubation…


After multiple days where seizures are constant… 

After seizures causing constant falling all over the house, including down the stairs and in the tub… 

After seizures causing imbalance and injuries from running into things… 

After seizures causing countless nights of interrupted sleep… 

After extreme exhaustion from little to no sleep… 

After days of walking around aimlessly…

After sometimes over 300 seizures a day despite being on up to 5 anti-epileptic medications at once… 

After multiple efforts with various anti-epileptic drugs...

After having to use rescue meds time after time after time...

After countless eegs (both inpatient and outpatient), sedated MRIs, doctor visits, and meetings…
 
After having surgery scheduled and then canceled because his case is too complex for the doctors where we live…

After days and nights of worry, anxiety, and frustration by Salesi and me… 

After countless times crying and crying until I couldn’t any longer… 

After questioning God’s plan… 

…Nami’s brain surgery is finally officially scheduled! 

I am extremely scared and elated. I have cried and cried and I’m not sure if it's the relief or fear that is causing it more...probably equally both. I’m excited for the possibility of less seizures, better learning, and an overall better lifestyle for Nami.

It has not been easy coming to terms with the idea of brain surgery. The prep for it required multiple sedated tests and tests requiring hospital stays. The planning has been intense…over a very long time. My son will have to endure extreme pain. There is a possibility it won’t work. There is a possibility it may only work for a short time because he has so many tubers that could become new “hot spots”. There may be complications. There are no guarantees. 

Deciding that surgery was the best option for our son was not an easy process. Every time I made my mind up to try the surgery route, I then tried to talk myself out of surgery. I convinced myself that we were taking too drastic of a move. Each time I thought against surgery, Nami stopped breathing and had a seizure within seconds. One time he fell down an entire flight of stairs because of a seizure right after I was questioning whether or not to go ahead with the surgery. At one point I prayed to God, apologizing for questioning His inspiration to get the surgery and vowed not to question it again. Oh how weak I am: a couple weeks later, my son had about 3 days in a row where all he had were absence seizures. He had started to say a couple new words and seemed happy. The thought crossed my mind, "Maybe we DON’T need to put him through all this pain with the surgery since he’s doing so well". A few hours later I was bathing him. He stopped breathing and he fell face down in the tub as he seized. OKAY! Note taken! He WILL be getting the surgery!

I’d like to say I never questioned the surgery after the tub incident, but that is not the case. I have continued to question it. I continue to question it to this day, but I realize that my questioning is out of fear of what we are about to endure. Nami will have to have two sides of his skull removed. We will have to fly across the country for this surgery. Our family will have to be split apart for a lengthy amount of time. The emotional and physical toll it will take on our little family as well as my entire family is tremendous. Yet I feel assured that it is the best option for Nami at this time. Thank you all for your continued thoughts and prayers for our family. Please come back for the next post which will be a happy one...thanks to PGHS and the community!

(I will post updates on Nami's progress at Nami's Page: After It Soaks In )

10 comments:

  1. My son is allmost 4 months old amd has the aame condition.....my thoughts and prayers are with u and ur family. I know it is a difficult process trust in God and his plan for u and ur family!!!!!

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    1. Thanks so much for your support! I send my thoughts and prayers to you and your family as well!

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  2. I went through the same fears when I was told my daughter had to have brain surgery for tsc in 2008. God brought us through, oh how little faith I had, God is the Almighty and can do anything. Praying for you and your family. May God Bless you all.

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    1. Thank you for sharing your experience and for your prayers!

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  3. Love your family. I am so happy things are moving forward. Thanks for sharing your amazing journey with us.

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  4. Where are you going for surgery? My daughter just went through surgery at NYU. It has been the best decision we ever made!

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    1. That is so great to hear! I hope we have the same result. Do you have facebook? If so, will you message me at Nami's Page - After It Soaks In? I would love to talk with you if you have some time.

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  5. Ok, I messaged you. Let me know if you didn't get it for some reason.

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  6. I know someone that can help you. His name is Fox. He's helped me and my family through many hard times. Talk to him. Please. C.O.L.Foxx@gmail.com

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