Our son AJ was born October 17th, 2016 in San Antonio, TX. We found out at our anatomy scan at 19 weeks that he would be born with a complex, incurable heart defect called Hypoplastic Left Heart Syndrome (HLHS). This cardiac defect means his left ventricle is significantly under developed and doesn’t function. It has one of the highest infant mortality rates among cardiac defects. HLHS cannot be cured, but there are a series of 3 palliative open-heart surgeries that reroute the blood flow with the potential to allow the child to live. As we slowly began to accept and educate ourselves on what our 4th child’s new “normal” would be, we met with many doctors to guide us along the way. We were told AJ had the best-case scenario form of HLHS and that we should expect his first open-heart surgery to happen during his first week of life.
My water broke early on a Monday morning, ready or not our heart warrior was on the way! AJ tolerated labor like a true champ and had a grip like none other. He came out crying, pink and needing no resuscitation! As the doctor delivered him we were all shocked to learn that his umbilical cord had not 1 but 2 true knots in his cord. For a typical baby one knot can prove fatal, but 2 was unheard of with a live birth. It was these types of surprises and roller coaster ride of emotions that would continue to be the chorus of AJ’s first year of life.
Our next unwelcome surprise came when AJ was 9 days old, the night before his first open-heart surgery. The NICU doctor stopped by AJ’s room to notify us his surgery was called due to something unusual on his echocardiogram. We were later told that they have never seen anything like it and it meant his heart was inoperable. After research and fighting the hospital to release us we had AJ life flighted to Texas Children’s Hospital in Houston at just 13 days old. I packed my bags sobbing and kissed my other 3 children and husband goodbye not knowing what the future would hold. I would never imagine in a million years what would transpire during our next 350 days that AJ spent inpatient fighting for his life at TCH.
We soon learned what great care truly was, the staff went over every aspect of AJ’s heart and just how rare and seemingly incompatible with life it truly was. Even at the #1 hospital in the country for pediatric cardiology, they hadn’t seen anything quite like AJ’s heart. The doctors assured us they would do everything they could, but they were also very honest in the fact of what our reality could potentially be.
During AJ’s 353 days inpatient between the two hospitals, he went through and survived more than most do in a lifetime: 8 heart catheterizations, 4 open heart surgeries, necrotizing enterocolitis twice, bowel perforation, bowel obstructions, septic shock twice, 2 emergency laparotomies, spontaneous CSF leak, g-tube placement surgery, tracheostomy placement surgery, severe pulmonary embolisms, pulseless v-tach, and CPR twice (once for 12 minutes and the other 10 minutes). We saw our beautiful innocent little baby boy go through the unimaginable. Our nights were spent on pins and needles in sterile hotel rooms petrified of the phone ringing. We were so used to a house full of kids that the silence of the rooms truly became deafening. We learned over time how to find the beauty of the unknown and ways to make our memories last a lifetime as we quickly began to lose count on how many times AJ had a code called and we were told to prepare for his death.
However, in typical AJ fashion he surprised everyone and pulled though it all! Much to everyone’s surprise he finally reached the point of being able to make our dreams come true and come home, to our new home in Houston. Due to us being in totally uncharted territory AJ’s doctors felt safest if we relocated to Houston to be near them.
On October 5th, 2017 the halls of the 18th floor in Texas Children’s CVICU were filled with streamers, balloons, doctors, nurses, therapists and staff as they cheered on AJ to his first time out of the hospital just 12 days before his first birthday! Our beautiful disaster of a child made us so happy yet extremely terrified to have home. It truly took a whole city/state to keep this kid going. He came home with so much DME stuff I was beyond overwhelmed: a trach, vent, PRN oxygen, PICC line for 5 IV meds he was getting every 6 hours, a separate intracardiac line dedicated for TPN (IV nutrition), a nebulizer machine, pulse OX, IV supplies, g-tube and supplies… basically a mini ICU room is what his nursery came to be. It didn’t take us long to realize not all DME providers are the same.
In June of 2018 we were finally given the green light to go back to San Antonio to live with AJ! We knew we needed a DME company with multiple locations and the ability, knowledge and heart to care for our AJ. I reached out to several special needs groups on Facebook and kept getting the same recommendation, so I called Apple HMS and made the switch. I was immediately amazed at their responsiveness. The transition was seamless and that continued even when we moved cities. We have had our share of DME companies and I am so thankful for Apple! Not only do they do an amazing job, explain everything and make sure you have everything you need for your child, they also genuinely care, and that is not easy to come by!
It really takes a village for children like AJ to do well at home. Without support children like AJ wouldn’t be able to be with us, at home. Camille and Vanessa (from the San Antonio office) aren’t just our reps/therapists, they are our family and a huge part of our team! THANK YOU APPLE!
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