The Surgery (continued)

In November 2006, our family headed to Phoenix, AZ for a preliminary surgery consult with Dr.Rekate. He described the approach he’d use for resection and his recommendation was postpone the surgery for a few months until a new intra-operative MRI was up and running. He explained this new equipment would provide him and his team increased visibility during the resection. We agreed to waiting and scheduled surgery for April 2007.
Grace went into surgery on April 20, 2007. The surgery went well and initial review indicated a 90-95% resection. We were told the following 2 days would be critical and we’d need to prepare ourselves for the recovery period.
We had originally believed Grace’s time in PICU and PEDs would be a 7-10 day stay, but within the first couple of days in PICU Grace was showing signs of distress and it became evident her post-op journey would not be typical. She was running high fevers, her sodium levels wouldn’t stabilize, and on the third day she had a large seizure. Within the first week things appeared to stabilize and she was moved to the PEDs unit in hopes that she’d be ready for going home; however, within two days she experienced another large seizure and her sodium levels dropped dramatically. She was moved back to PICU for monitoring where she stayed for a month post-op before being moved to Neuro-Rehab for another 3 weeks, only then was she stabilized enough to be medically transferred to a hospital closer to home where she stayed for another week, before being released.

Grace’s sodium levels and temperature continued to be a concern after being discharged from the hospital and she required an in home nurse to do sodium checks multiple times a week through the broviac central line that had been put in while in the PICU.

Due to the long stay in the hospital, the damage done to the hypothalamus, and the stress on her body, when Grace returned home she required continued rehabilitation. She continued to need speech therapy and occupational therapy. Due to the damage to the hypothalamus Grace’s metabolism and thyroid had been impacted, causing her to gain quite a bit of weight as well as decreased muscle strength due to the time she was pretty much bedridden.

The 60 days we lived in the two hospitals took a toll on our entire family. As a mom, I never wanted to leave Grace’s side in the hospital and in fact I only spent 1 night away from her the entire time. Every other night I was at her side. But this decision meant I had to live away from my Sarah, Grace’s younger sister. Sarah, was only 16 months when Grace had surgery. We had originally taken Sarah with us to Phoenix for Grace’s surgery, but when it became clear Grace’s post-op complications would require her to stay in the hospital, Perry and Sarah returned home to California. It was heartbreaking to have our family split between two states. We did our best to talk on the phone and to comfort both girls that our family would be back together soon.


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