An update from the hospital

A week ago Wednesday, Ella had her regular quarterly appointment at Scottish Rite hospital’s rheumatology department. They checked her out, ran some blood tests, and had no new ideas about the continuing weakness in her legs. After a little pushing, they agreed to refer her for a neurology consult at their hospital within the week.

By this past Wednesday, we hadn’t heard from the neurology dept with the promised phone call and appointment. On Thursday morning, she woke up with a noticeable drop in muscle strength, too little for her to use her crutches. I called Scottish Rite that day to follow up again on the neurology and to notify them that the weakness was getting worse. I got the brush off. The promised week was just an estimate of when she’d see someone, the doctor was out of town, etc. 

I hung up the phone and called our family doc whose nurse began calling every pediatric neurologist in town to get her in somewhere ASAP. She was able to get us in for this coming Monday with Ella as the first call in case of cancellation on Friday.

Yesterday afternoon, a nurse from Scottish Rite called with the lab results from nine days before. Ella had elevated blood levels consistent with muscle breakdown. I needed to get her to Children’s ER right away. (Why the nine day delay if the numbers were that bad – 12 times the normal levels – I couldn’t even begin to tell you. The rheumatologist called ahead to Children’s and had them waiting for us when we arrived.

The follow up blood test in the ER showed that her levels had returned to normal levels, but no one was looking at that any longer. They were looking at her legs (at last!!!) and they didn’t like what they saw. There is significant atrophy in her thighs. (We’ve been screaming that for a month now.) Her muscle strength has diminished until she can wiggle her toes and shift her legs slightly (Progressed from just thigh weakness to whole leg), and the reflexes in her knees and ankles is all but gone.

They admitted her last night as a rheumatology/neurology patient and after three assessments this morning we are waiting to hear their plan of attack. We’re all frustrated by everything that’s happened, and yet relieved that people are listening and looking at last.