Blog Archive

Monday, December 26, 2011

Ava's Seizures

Ava's still in the hospital where she's continuing to drift between seizing almost continuously, and being too sedated to eat or take her medications by mouth. No one has any new ideas, and Matt and I are discouraged and frustrated with the lack or an apparent path. She is completely incapacitated. She can't develop, respond to us, engage with us or even get comfortable for any length of time.
She's getting rescue meds (fast acting drugs to stop her seizures because they won't stop on their own) multiple times a day. Her head IV is still working, but usually after 3-4 days in the hospital, her IVs quit working because they clot off. So it's likely they'll need a new site soon, and so far, she's been a difficult one to stick. There's been talk about putting in a port, which would be a little reservoir under her skin that would give them constant access to the blood they need to check her med levels, but that doesn't solve the IV problem.
It is terribly stressful to watch our sweet girl suffer and not be able to do anything about it. Ultimately, Ava continues to need a miracle.
The big girls and I are still in California, and we're being loved on and distracted by our amazingly wonderful family. I'll post a few pictures to the blog as I'm able, but wanted to get this out urgently.
Thank you for your prayers.
We hope you had a truly joyful Christmas.


Alyona said...

Grace to you two and to your little one!

Anonymous said...

Prayers from Nora and our family!
Have a safe journey home.

Anonymous said...

Prayers prayers prayers. God has put Matt with her for a reason.

Angela said...

I have been praying for your family. I am a WUMCHA member that recently moved to the area for my husbands cornea fellowship. My SIL was diagnosed with ovarian cancer soon after her son was born and had to stop breast feeding. Someone donated milk for her baby from their local church and she mentioned that it is also common for babies in the NICU to need donated breastmilk. I have an abundance as I am breastfeeding our 2 month old right now so if you are in need then we could work something out. Let me know.
Angela Aaker

Sue @ Laundry for Six said...

Sara, I've never left a comment before, but I've been reading your blog for awhile. I have a daughter with Turner Syndrome about the same age as Elizabeth. I have been keeping your family, and especially little Ava, in my prayers. I don't know if you or your doctors have any connections at Johns Hopkins, but there is a neurologist there, Ben Carson, who is famous for treating pediatric epilepsy and has a very interesting life journey himself. I'm not sure how hard it is to see him, but here is his info:

Sara said...

Thank you all for your comments. Your encouragement and prayers are life giving!
Angela, your offer is so kind. I'm so touched by your generosity. Bless you.
Sue, thank you for your advice. I've read a book (and seen the movie) about Ben Carson and know God has used him in amazing ways. If there is ever a chance that his expertise could bless our Ava, you bet we'd pull every string at our disposal to see him. Bless you and your family, how fun would it be for our big girls to meet someday!