unsettled

I'm sorry to just now be posting an update. I've really struggled this time because I feel like I should be upbeat and positive and I just haven't had it in me. This has been a nightmare pretty much to be honest.

It all started when Hillsboro EMT's sent David away from the care flight launch site telling him Hannah was stable and the careflight was 5 minutes away. So, we grab our things and head this way. Half way there I call Cook's to see if she was in ER or PICU and they didn't have her and had no clue that she was coming there. Which meant things had to have progressed beyond her being stable and she was in trouble. I called Hillsboro and they wouldn't tell me anything. So, needless to say I was freaking out because I had no idea where my baby was or how she was. We continued on to Cook's and found her in ER. She had just landed and someone hadn't radioed to tell them she was coming so that's why they had no information. We are then met by the careflight EMT's that explained the Hillsboro thing and what happened and that Hannah was in pretty rough shape. About that time I saw everyone talking around her room and saw someone look concerned and say, "they are removing the tubes!??!" I had just been told she was intubated for respiratory failure and every time before that happened we spent 24 to 48 hours in PICU before removal. So, I thought that was BAD and that we lost her. This whole time I was visibly upset and they kept trying to get me to sit down. That was the final straw and I lost it. Finally the ER doctor came out and kindly explained that Hannah was fighting the intubation and breathing well on her own so they decied to remove the tubes. They explained and apologized because they were trying to work what they normally do with what Hillsboro did.

We then came to the were admitted where we finally got seizures to stop around 2:00 a.m. They did an MRI yesterday and then hooked her up for a video EEG. The epileptologist came in and decided to take her off keppra and put her on tegratol. He also talked about a different rescue med for me to use. The geneticist came in and ordered a blood draw for the PCDH-19 mutation we needed. The only lab that does the test is at Harvard in Boston. Right now she is down having an x-ray. Her MRI showed she had a sinus infection and they are checking her lungs to make sure they are clear.

It looks like we'll go home on tegrtol, weaning keppra and on a new rescue med called "verus"(sp?) Please keep praying. WE know it's all that keeps us going.