UPDATE:
Wow. I am so sorry how long it has taken for one! But, we got a lot of information yesterday around 5. I want to make sure to get updates to everybody so I am posting here, Facebook, and also our website that we created. Please take a look!
www.brodysbelievers.com
So, Saturday through Sunday we were told that he only had one seizure overnight that lasted two minutes long during his sleep. The epileptologist said she wanted to leave him on his meds another day before she weaned him since we didn't get hooked up until later in the day Saturday afternoon. I had taken the first shift, and Michael had taken MJ trick or treating (he had a blast). We were already tired, as, in the hospital setting- sleep is challenging.
Sunday afternoon and night Michael was on duty in the hospital with Brody and I had MJ and we were fast realizing that we needed help. (Despite MJ being so well behaved and stuck to us like glue, the "off duty person" just needed rest and space is limited by the hospital bedside) So, my mom took a train in all by herself to NY yesterday!
The doctors rounded at about 1 yesterday and we learned that Brody had 10 seizures. Keep in mind, this was without weaning meds. They said sometimes he would just be swiping his iPad, stop, and start swiping again. The good news is, they are all coming from the same area. The right occipital tuber. So, we have a focus. A place to target for surgery.
And, they feel they had enough information that they let us go! We didn't have to stay and get even more exhausted and possibly pick up an unwanted germ that could compromise surgery! We head back tomorrow for a MRI with mapping, and they even moved the surgery up from Friday to Thursday!
We are so impressed with everything so far! I cannot believe how busy we have been, and we haven't even had surgery yet. Brody's behavior during the EEG was so good. MJ was so helpful in playing with him and loving on him. We've met some other TS families who were there for surgery and it has been so uplifting to hear their stories!
Thank you all so much for your support! Your calls, texts, emails, messages! I just can't believe how non-stop it has been, and yet everything has gone so smooth and so easy so far.
I have to admit, 10 seizures was a bit surprising after "1" the previous night. But, it is affirmation of why we are here. We have so much hope for what can happen after surgery and hopefully he will have a vocabulary explosion! Brody has been such a little flirt with all the nurses. He just flashes them that big white smile!
Thanks for reading! The next posts won't be as long, but I wanted to update thoroughly!
Much love,
The Marlins
