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Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Thursday, December 15, 2011


    We had such a "high" yesterday with our encouraging news from the cardiologist. But not even 24 hours have passed and things have kinda flip flopped. Dake had to have two treatments back to back before bedtime last night. After the last one he seemed comfortable and went on to bed.  David said he slept well until 4:00 (when David left for work).  From 4 o'clock until 6:30 a.m. I was called continually by Dake for readjusting and movement.. He seemed to feel OK just uncomfortable. 
      When the ladies came to help  with Dake's( around 7:15) bath and such I left to pick up some artwork.  Before arriving at my destination,  I got a phone call from one of the ladies telling me Dake was  running a fever and his pulse was high.  I made a U- turn and headed back. I called the doctor (pulmonologist) on the way home. He said if his fever got any higher to go on to the hospital.(worried about possibly turning into pneumonia) ( as I mentioned before the lungs and the heart are latter parts of this disease.)  I returned home and now waiting on the home health nurse to follow up with Dake after the ladies had called.
Dake is now resting and I hoping things will flip flop back soon.  There is nothing predictable about this disease. As we have seen in the last 24 hours things can change fast .Pray!

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