Journal entry by Barbara Bradley — Nov 19, 2010

Unfortunately we are in the same place despite efforts to keep her seizures at bay. Katie had 21 yesterday. When the neurology team came by mid day I was very frank with them….

I would like nothing more than to get her stable and go home but nothing is helping. How long do we continue to fight something we already know how to fix? I am not taking her home like this and I am not staying here until December 14th so this really is just a scheduling issue at this point, right?

Every day of highs and lows has been preparing me for the big day and today was certainly no exception. I didn’t sleep well thinking and wondering what the surgeon was going to tell us this morning.

Dr. Grant came to meet with us personally this morning and the second he sits down Katie pops up from the crib, smiles her gorgeous smile, batts her long lashes and says with the articulation of a speaking child “hi!” while waving at him. I almost burst into tears right then. As it turns out Thanksgiving is a holiday but Friday is not and he is here through Tuesday of next week. So, Friday is the day. In the 12 years I have known my husband I don’t think we have ever high-five’d but the second Grant closed the door we did just that! God is good. Nothing is impossible.

Unfortunately the rest of the day has gone downhill. Katie has been drugged up most of the day and has been sleeping….and having lots of seizures. I think the count is 27 so far and the night is young. They gave her some atavan which has only knocked her out so much that she is getting meds via IV now. This evening was very scarey. At 7 pm the nurse came in to give her meds and she went into a seizure and stopped breathing. I have seen her turn blue and her oxygen drop to 39 but never down this low for this long. The nurse starts grabbing the oxygen bulb and then Katie dropped all the way down to 7 and she throws the bulb down, hits the code blue button and yells down hallway for everyone. Oh my God! It’s bad enough when I was by myself and hit the button last time we were here but when a nurse gets nervous that is a time to panic. Thankfully the seizure ended and she recovered quickly after that. Now everyone is really on high alert.

She is getting meds via IV right now and getting fluids because she is too out of it to eat or take meds. She can’t have food after midnight anyway because her MRI is with sedation in the morning. As if she isn’t completely sedated as it is.

Four more days. If she can just hold out til Friday she will have a new life. We will all have a new life. Then I can worry about school and boys and driving and all sorts of things.

So much for my “Christmas miracle” instead we will have a very thankful Thanksgiving…..while we eat turkey in the cafeteria 😉

We can’t say thank you enough for all the prayers. Prayers…. and my big mouth saved the day!