Frankie's Story

Frankie was adopted at 5 1/2 years old. He is an amazing child. He was home for about 8 months when he had his first seizure. Then, he was diagnosed with Epilepsy. We went to many Dr's and tried many different medications. We discovered NYU. The Dr's and staff there have been amazing. Frankie was evaluated to see if he was a surgical candidate. Well, he is. They plan on doing an invasive EEG (EEG leads placed directly on his brain) and then weaning his meds to allow him to have seizures. They will then determine which areas are causing the seizures. If the area is a safe area to remove they will remove that epileptic area of his brain. They do not think in Frankie's case this will be a cure, but, they hope it will significantly reduce his seizures so he wont require so much medication. It is a 3 step surgery. He will go to the OR to have the leads placed on his brain then brought back to the Pediatric ICU and wait for seizures to occur. He will then go back to the OR for a resection (if it can be done), then they will replace the EEG leads. He will return to the Pediatric ICU again and wait to see if he has seizures. Step 3 he will then go back to the surgery for further resection, remove the leads, and close him up. Surgery is scheduled for 12/9/10 and we will probably be in the hospital for Christmas. The poor kid will be put through a lot. We trust these Doctors and staff so we hope this is the right thing to do.

Friday, December 10, 2010

Oh What A Night!

Frankie had a rough night. He was scared and uncomfortable. They gave him plenty of pain medicine. He was angry about every tube and IV. I mean every tube. He was fascinated by the tubes and drains too. He is very irritable. This morning he woke up, sat up, and insisted on brushing his teeth. He can't play with anything we have with us now. Both hands have IVs in them. His new ipod is a no go because his ears are covered. So this morning we have done stickers and hidden pictures together. Our morning has started at 4 but I don't know when our night ended :). He is much more alert today. I asked him what he wants as a present when we get out of here. He replied the "yellow transformer bumble bee". I told him I will get him one when we go home. He insisted that he couldn't go to the Toys R Us in NYC because the dinosaur is to loud and scary! So all wheels are turning. This morning Frankie will get another MRI.
Sent from my Verizon Wireless BlackBerry
Posted by at

3 comments:

  1. JenniferDecember 10, 2010 at 6:03 AM

    Hi Michelle,
    So glad to hear it went well. THe anesthsia after affect lasts quite a while, expect disrupted sleep, possibly night terrors for 3-6 weeks. Also with Lian the codiene pain pills made her feel sick and miserable.I brought my lap top and several DVDs with me so she could watch what she wanted.
    You're in our prayers!
    Jennifer

    ReplyDelete
  2. AnonymousDecember 10, 2010 at 6:26 AM

    I am elated that "all the gears are working" but sad that he is so upset with the tubes. Hopefully they will be able to remove some soon! Hugs and kisses to all of you!

    ReplyDelete
  3. Karen and ChrisDecember 10, 2010 at 3:30 PM

    We are happy that Frankie has completed his first step in this journey. We are holding him in the Light and sending prayers and healing energy his way! He is such a loving presence and has such a beautiful spirit! Love to all of you!

    ReplyDelete

Subscribe to: Post Comments (Atom)