So upsetting.....

a good friends son is in the hospital this week for what is going to make this a very long month for them. They are doing : Phase 1 will be the entire week of Oct 3rd. Mon is the MRI and the EEG gets put on. Tues is the BEAM test, Wed is the PET test, and Thursday and Friday are SPECT tests. He will be sedated for all tests except for the one on Tuesday. "Following the phase 1 T's nuerologist and the neurosurgeon will analyze the data and determine where the grids and strips need to be put for phase 2 - if they are used at all. The only way T won't have the grids and strips is if they deem he needs a complete hemispherectomy. So we hope that grids and strips are needed in hopes to just remove a part of the right side, not the whole thing.
Phase 2 is schdeuled for Oct 19th at 8:30am. The surgery is 6-7 hours long. He will be in the ICU that night, and hopefully in a room on 9 North that next day. They go in and put on the grids and strips on the inside of the brain and will monitor T for a week. They will also send signals to the brain to determine what that part is responsible for, to give us an idea of things he may lose after the surgery. He will remain in the hospital for a week - for obvious reasons - can't go home with wires coming out of his head)
Phase 3 will be Oct 26th. That surgery is at 8:30am, and is 7-8 hours long. He will be in the ICU that night, and hopefully in a room on 9 North that next day. If they only remove part of the brain, T could go home as early as 5 days post surgery. That is the best case scenario. If they do a hemispherectomy he may have to go to Spaulding Rehabilitation Hosptial for 4-6 weeks for intense therapy. So our hospital stay could mean we get home for Halloween or we are in there until Christmas time."

Her mini update to me today said that The test results aren't coming back in their favor ... it is showing that the seizures are starting on both sides of the brain, which means surgery may not be an option - and if they did do the surgery, the chance of him being seizure free is slim.

They will know more on Friday and the actual details from the entire neuro team next Wed or Thurs - hopefully that past day's tests show more right side stuff, and no left side activity.

This is so upsetting cause they had such a hard time getting pregnant (and were successful with IVF) and he has been having seizures since he was 2 months old. He is 6 weeks younger then Lexi! which makes it that much harder I think. I cannot even begin to imagine what they are going through. And can only offer my prayers and support to them....which being 5 hours away is difficult. thank god for technology! So for any of you reading this...please say some prayers.