Sunday, June 7, 2009

We're home....

We came home yesterday evening around 7. Hannah was VERY happy to be home even if she was lethargic and groggy. She ate some chicken nuggets last night too so we were happy about that. David slept with her just so someone would be close to watch for any differences we needed to notice. He's such a good daddy.

I practiced drawing the versed last night. They sent me home with 3 vials and a handful of syringes. They also gave me a practice vial, syringe, and needle so that is what I did. I practiced and cried. I'm not sure why my anxiety level is up so much. I had David pray for me last night. I usually do so well and really hold it together. There was so much about this last hospitalization that was unsettling though and I think I'm just working through all of it. There have been so many levels to her illness and I just have to come to grip with each level and do what I have to do. I think that must be where I'm at. The epi told me that Hannah's seizures were coming from her frontal lobe(never been told that before) and that they generalize quickly. He told us that frontal lobe seizures are VERY difficult to control with medication. I asked if there was anything we could do to keep her from going status and that is when he told me about the versed. We also saw the geneticist who ordered a blood draw for the PCDH-19 mutation. That test is only done in one lab and it's at Harvard in Boston. It will go out tomorrow and we should know something in 3 to 6 weeks. If it comes back normal they are going to do a full metabolic work up. So, many things I can't even tell about them all.

Hannah woke up well this morning and seems to be rebounding. She is wobbly and her balance is off but she is ready to play with daddy so that is a sign.

We came home adding tegretol and orders to wean keppra. Also as an an added emergency med we have versed. So, currently we'e taking 4 seizures meds with orders to wean one and we have 3 emergency meds to use to try to stop seizures once they start.

I really appreciate all the prayers and support. You have no idea how much they mean to us. Please keep them coming.

1 comment:

Anonymous said...

Hi Marcey,
You're having a time.
I'm praying!

(((((cyber hugs)))))

Thank you for your faithfulness with the updates.
Love ya,