Alexis, born 2014
My name is Stacy and I have two wonderful girls; Alivia who is three and Alexis that just turned two on May 14th. Just before Thanksgiving this past year, Alexis was running a high fever for several days. My husband took her to the pediatrician they day before Thanksgiving. Friday night the fevers were still high and we had her seen again Saturday morning and a doctor from another office was covering. She spent a long time listening to her heart. She mentioned a murmur and suggested we get it checked out. She said she believed it to just be from the fever but best to get it checked. I scheduled an appointment with the cardiologist for December 18th and received a call on the 7th saying she was scheduled with the wrong doctor and if we could come in on the 9th. Absolutely, the sooner the better. We arrived for her appointment and did an EKG. Alexis was pleased with her Minnie Mouse gown. As we were waiting for the Echo, a doctor walked by and mentioned that she was "a little bundle of energy." We went in for her Echo that lasted an hour and a half to two hours. Alexis did very well, took a nap (as she has made that a habit now). We went to a room and waited, thankful for our bundle of energy to keep us occupied while we (my aunt and myself) waited and waited.
The door opened and the doctor walked in (same one from the waiting room) and he suddenly got a look of shock on his face. He proceeded to tell us that my baby girl had ALCAPA. That she was very sick and needed to have open heart surgery. He said outwardly you can’t tell and he couldn't believe how much energy she had and how active she was, that she should have been very lethargic being almost 19 months old with this CHD. He had wanted to admit her that night (by this time it was 7:00pm) but there were no beds available. We pulled ourselves together and made the two hour trip home, packed bags and waited through a sleepless night for the doctor to call. Within 20 hours she was being admitted on 12/10. Friday she had her catheterization to confirm the diagnosis and to check her heart function. We stayed in the hospital all weekend for her surgery Monday morning at 19 months old to the day. Her surgery went fantastic. She was moved out of the CICU Tuesday evening and was running the halls Wednesday afternoon, chest tube and all. Tube came out Thursday. She was discharged Saturday afternoon and the doctor put us at the Ronald McDonald house for a couple of days to be close She had been having issues with her heart rate being high and they couldn't find a reason why other than her heart reacting to the surgery. Monday we were cleared to go home and just in time for Christmas.
Story by Stacy, mom to Alexis - Delaware