July 7, Strong Memorial Hospital, Rochester NY

After a long night of very little sleep, the nurse came in and said that were going to do a test run to try and extubate Grace. They had done this once the night before, and she had immediately started desatting and forgetting to breathe. So, I was a nervous wreck. She was starting to wake up a bit more though, and the nurse thought it was time to try. She called in the doctor, and the next thing I knew EVERY doctor and nurse were in the room. I knew nothing was wrong, I was standing there and could see her stats, but it was still very unnerving. It's a teaching hospital, so these people need to learn! (Praise the Lord that we live in a country where we can have access to this kind of health care.) Anyway, all of these people came in to watch the extuabtion...and she decided to do it herself!! The nurse had been holding her hands and she turned to get something. I was too far away to get to her in time, and the next thing we knew she was pulling on that tube. That's my spunky girl!! She didn't get it all the way out, but far enough. So, we didn't do a test run...she just got extubated. She did well for a few minutes, and then she had some difficulty, so the nurse put a nasal cannula on her. She hated that, and kept trying to take it out of her nose, even in her sleep.

She fell back to sleep for a while, and then when she woke up, I tried to get her to talk to me. The nurses had told me to try, so we could see if she was trying to form words. Well, she just stared at me blankly. The best I could get out of her was OW.  My mom got there, and she smiled a little, but really she didn't say anything. I was VERY worried at that point, because Grandma is Gracie's FAVORITE person. Just a few minutes later, Carolyn and Sue came walking in. As soon as Gracie saw Sue, her face lit up like a Christmas tree and she said "Grandma Sue!!" Her voice was tiny, just like it was when she finally started talking again after the stroke. It seemed somehow fitting to me, that she saved that reaction for the person who did CPR on her. She was awake for a bout 5 minutes and then she fell back to sleep. At some point, one of her doctors came in and told me that her CSF had looked clear, so there was no sign of a shunt infection. He said that so far, her blood work had been good as well. He was continuing to give her the strong antibiotic, just in case. The last thing they wanted was for her to spike another temperature and seize again. He had ordered an EEG for her that day, to see if she was still seizing at all. He honestly had no answers for me, and at that point, told me we might never find out WHAT caused the seizure.

In desperate need of some clean -up, I headed to the RMH with Josiah. While I was there, she had the EEG done. I got to miss out on seeing all of those electrodes all over her head. It's ok, seeing that once is definitely enough. When I got back to her, she was awake and had a little more energy. She was staying awake for about a half an hour at that point, and trying to talk. She asked for a Popsicle and said "YUCK" to the purple one.  To me, this was a very good sign!! Not much really happened from there on out that day...late that night a doctor told me that she felt very strongly that she had viral meningitis. Hand, foot and mouth disease is one of a group of enterovirus' (it's real name is Coxsackievirus). Most kids who get it get a fever and discomfort for a few days, and nasty blisters to boot. Due to Gracie's prior brain injuries she is more susceptible to getting the complications. You know those warnings  that you read on the internet that say " 1 in 98 children may develop viral meningitis or encephalitis and need hospitalization"? Well, that's my Gracie girl!! Basically, the treatment for viral meningitis is just a wait and see plan. There is no antibiotic for it since it's a virus (though she was still being covered by antibiotics). So, we waited for more test results and watched her sleep, knowing there was little else we could do.