Here’s a little background on McKenlee- her name has all of us in it. McKen is from her sister McKenzie, Lee is Zack’s Middle name, She has my middle name Dawn, and her Daddy’s last name.
She was born with Trisomy 21 and 2 heart defects, Coarctation of the Aorta and Atrioventricular Septal Defect (AVSD) on Feb 25 2013. She was airlifted from Northeast to Levine’s Childrens Hospital on the day she was born and stayed in the Cardiac ICU until she came home the first time on July 14,2013. In between those dates, she had 13 surgeries with her first open heart surgery to repair the Coarctation of the aorta when she was 3 days old. McKenlee had a lot of complications after that surgery that required the lengthy stay at the hospital. I was told on 3 different occasions that McKenlee would not make it.
During her 1st open heart surgery, her thoracic duct was cut causing her to leak fluid in her 3rd body spacing. The doctors and surgeons tried everything to get the leakage to stop even having surgery called thoracic duct litigation. When that did not stop,
Her surgeon did an experimental surgery that has never been done here. He went in on Easter Sunday of 2013 and placed a Denver Shunt on her heart, a pump on her right rib cage and tubing in her body. The nurses had to press that pump 10 times very hour in hopes that this would redirect the fluids that McKenlee was leaking until it eventually would stop. 3 days later, the radiologist found a hole in McKenlee’s intestines. They were actually pumping her stool through her heart. We were very fortunate that McKenlee didn’t become septic from this. An emergency surgery was done by her beside as she was too sick to move to the operating room. This surgery removed a part of McKenlee’s intestines which left her with an ileostomy bag. Then the hospital tried unsuccessfully 5 times to get McKenlee of the ventilator but all attempts were unsuccessful as McKenlee could not clear her airways. In June of 2013 McKenlee received a feeding tube, a trach and a Nissen (which is where they tie the top of the stomach to keep her from being up to throw up).
McKenlee came home on July 14, 2013 on a ventilator, a trach, oxygen, ileostomy bag, feeding tube, and 24 hours pulse ox reading. We had around the clock nursing. McKenlee was only home for 4 days and we once again had to be airlifted from Northeast to Levines. McKenlee had gotten a staph infection that presented itself like burns all over her body. Her fever went from 99 to 107 by the time we got to the hospital. They were packing her on ice to get the fever down and even prepared us that if they could not get her stable that they would have to air lift her to Chapel Hill’s burn center because they had never dealt with anything like this before. Her blood pressure dropped 40/15. It was very scary !! Levine’s was able to get her stable and she spent another 2 weeks in the Cardiac ICU before returning home.
McKenlee spent several occasions in and out of the hospital for pneumonia and aspirating. In Feb 2014 we were able to get her ileostomy bag reversed, in Sept 2014 she had open heart surgery to repair her AVSD. Then in August 2016 her trach was removed. The only thing we have left now is the feeding tube which eventually will come out as soon as McKenlee is able to eat substantial amount of food that would no longer require the tube.
McKenlee is required to follow a cardiologist, Ears Nose Throat Dr, Gastroenterologist, Endocrinologist on a regular basis. She has to go to a dentist in Matthews that specializes in cardiac children. It has been a very long journey in her short life but so worth every minute that I have with her.
Photog~ Ashley Burgess
A&G Photograohy Rockwell NC