the Beginning

 

Madalinn is a sweet, caring twelve year old girl.  She is a great friend, sister, and daughter.  She loves stories, painting, yoga, and making movies.  

For as long as we can remember she has never enjoyed running and playing.  When asked to play tag with friends she always said no.  She'd say, "I don't like the way I feel when I run."  This year we noticed increased fatigue.  She no longer like to ride bikes and became anxious to go on family walks.  It was hard to decide if being slow and inactive was part of her personality or if there was something physically going on.  

Wednesday, Oct. 27

We deiced to get her checked out when her period lasted for 4 months and the fatigue was getting worse.  We suspected she was anemic.  Our pediatrician listened carefully and was very thorough in ordering tests and giving referrals.  My mom arrived for her scheduled visit and was able to stay with the boys while I took Madalinn to the lab for a blood draw and EKG.

Thursday, Oct. 28

At 11am the Pediatrician called saying the EKG came back showing she has cardiomyopathy and she needs to have an echocardiogram at Children's at 1:00.  The test and meeting with the cardiologist would last about 3 hours and they asked that both parents come to the appointment.  At that point we knew something was wrong.   We were so glad my mom was here so we didn't have to find a sitter for the boys so quickly.  

After the echo the cardiologist asked Josh and I to meet with him in the other room.  He said, "Your daughter's heart is very very sick.  I knew from the EKG that something was wrong, but now the Echo shows us that she has Pulmonary Hypertension.  We will be admitting her into the hospital today to the cardiac ICU.  The Cardiologist working on that floor this week is Dr. Phelps who specializes in Pulmonary hypertension.  You are in good hands."   We were in shock and didn't really know what kind of ramifications this news held.  

Once we went back into the room with Madalinn the Cardiologist said to Madalinn, "You've been feeling pretty bad, huh?  We want to make you feel better so you are going to stay here in the hospital."  She was devastated and scared.

When we got to the "room" we were greeted by our sweet nurse Courtney who tried to make Madalinn feel comfortable.  Madalinn got another EKG, a pic line for medications, and an abdominal ultrasound.  As the day progressed she began to feel less upset and tried to get settled.

We have found Nationwide Children's Hospital to be a wonderful place.  It is beautiful and all of the personal are so kind and skilled.  We have an amazing team of doctors who are really studying her body and working hard to create a plan for her.