An Unexpected Journey ~ Part 4 – What are we Doing?

On Monday morning, September 14, Addy was admitted to CHOP for her intracranial EEG. We were prepared for a 21-day stay, but were hopeful it would be much less. Our family stepped in to care for Ana when she wasn’t in Kindergarten so that Brad and I could bounce between work and the hospital. We were committed to one of us being home each evening to put Ana into bed.

Once again, our church families overwhelmed us with food, gifts and prayers. We were physically and spiritually prepared.

There was nothing that could have prepared us emotionally.

When Addy came out of surgery, she had 14 leads on her brain and a massive bandage wrapped around her head like a turban.  We were told we needed to keep her as still as possible.

Really? Keep an active three-year-old as still has possible? How?

We were given an aide, 24/7, to make sure she didn’t move.

The hospital room quickly became a battle zone. Addy battling for the opportunity to move about. Addy battling against taking her meds.

She soon gave up. And headed into a deep depression. She stopped eating. She stopped drinking. She started having anxiety attacks when the nurse came in with meds.

And she didn’t have a seizure.

Two weeks stretched into three and our family was at a breaking point. Ana cried hysterically each night when I called from the hospital. I was 8 months pregnant, extremely uncomfortable and trying against all odds to keep my blood pressure normal in the most stressful time of my life. I had mommy-guilt on every level.  

WHAT. ARE. WE. DOING?

The doctors seemed to have a single focus. Seizures. They were unable to see the whole child—the child that was emotionally unresponsive. The child that was losing weight by the day. The child whose family was crumbling around her. The medical team was wanting us to stay 2-3 more weeks. We were broken.

Brad gave an ultimatum. He told the doctors, “On Sunday, October 3 we are going home. I don’t care what you need to do to make that happen, but we are going home. Our three-year-old is depressed, our five-year-old is borderline hysterical. We can’t do this anymore.”

The next day the doctors attempted to trigger seizure activity in Addy’s brain, without success. The doctors were baffled. Focal epilepsy—the type of epilepsy Addy was diagnosed with—doesn’t go away. It’s a lifetime diagnosis. Did God answer our prayers?

We were discharged and sent home.   

A few days later we received the heartbreaking news. Because Addy had no seizures, she was no longer a candidate for brain surgery to cure her epilepsy. Were those three weeks of hell all for nothing?

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.

Deuteronomy 31:8

An Unexpected Journey – Part 1 – And so it Begins – Read Here

An Unexpected Journey – Part 2 – Some Answers – Read Here

An Unexpected Journey – Part 3 – Hope – Read Here

An Unexpected Journey – Part 5 – Read Here

An Unexpected Journey – Part 6 – Read Here

MORE TO COME…