Friday, September 23, 2011

A Rollercoaster…

Recently we had an opportunity to take all of our kiddos to Hershey Park, a local amusement park, famous for the smell of chocolate in the air and roller coasters, lots of them.  Drew, Jack, and occasionally Megan and Sophie took advantage of as many of the rides as possible, Lucy and I rode the handicap accessible train over and over with the occasional carousel ride thrown in for variety.  Drew kept asking me if I wanted to trade places with him so that I could ride a roller coaster or two.  No thank you, our life is enough of a roller coaster ride for me .

Last weekend we participated in the DelVal 2nd Annual Energy for Life Walkathon…a high.  On Sunday we had issues with Lucy’s CVL (central line) which lets just say caused me to want to throw her pumps out the window…a low.  One Monday, one of the lumens on her line stopped working all together causing us to spend most of Monday at the hospital doing dye studies, consulting with surgery, tracking down Dr. R, and eventually landing in day med clot busting her line…another low.  On Tuesday morning Lucy started back with music.  She did better than I expected as did I…a high.  Therapy was a bit of struggle this week as it is becoming more and more obvious that our girl is just not able to tolerate as many of the activities that she once did…a low.  One Thursday morning I received a call from Lucy’s cardiologist that her holter monitor from last week came back showing ventricular tachycardia.  Lucy is going to need to wear an event monitor for the next month to get a better picture of what precisely is going on with her heart…major low.  We had a productive appointment with Dr. R Thursday afternoon…I guess you could call it a high.  He discussed some options for our girl that are not necessarily what a mama wants to think about…a low.  Last night Lucy woke with a fever, which landed us in the ED for most of the day…definite low!  We drew cultures and Dr. R gave her a round of antibiotics and sent us home, telling us that he would call if anything grew …a high cause we did not automatically get admitted.   Tonight we had dinner and movie night with our kids while Lucy slept…a high.  After dinner Dr. R sent me an e-mail that Lucy’s cultures are positive…a big time low.

We are currently on our way back to DuPont for the seventh time this week!   I would like to get off this ride please… I will update more when we know more.

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