Hypoplastic Left Heart Syndrome Warrior, Son, Advocate, and Spoonie Threads Model
Learn more about AJ's powerful story and his supportive family as we celebrate Tracheostomy Awareness Week!
AJ was born October 17th, 2016, with a severe uncurable heart defect called Hypoplastic Left Heart Syndrome (HLHS), which essentially means the left side of his heart is too small to function. While we found out about his heart defect during his anatomy scan at 19 weeks, the prognosis drastically changed once he was born, and we discovered his particular type of HLHS was extremely rare and the typical palliative surgeries they perform for HLHS are often unsuccessful with his type. The hospital suggested we take him home and love him for the time we had left with him. We immediately made the decision to have him transferred to the #1 pediatric heart center in the country for his best chance of survival. At 13 days old AJ and I said goodbye to his 3 siblings and our home and were life flighted 3 hours away to Houston. Little did we know it would be 353 days before we would all live under one roof together!
When we arrived in Houston things moved fast, we learned just how truly unique AJ’s heart was and that despite how good he looked, he was incredibly sick and unstable. It was at this time we had decided that we never wanted AJ to sense that he was the cause of pain or sadness for us, it was sometimes a difficult promise to keep to him, but we did our best to maintain it even when things were the gloomiest.
We kept his room a place of happiness, hope and celebration! We dressed him up and decorated his room for every holiday. We focused on what we did have control over and for us, that was his quality of life. By the time he was 6 months old he had undergone 4 open heart surgeries, 7 heart catheterization, coded multiple times, and had surgery for a gtube and ileostomy. We finally thought we were seeing the light at the end of the tunnel when AJ was starting to have apnea issues with certain medications. We began this cycle of him doing well, then going apneic, he would need intervention to be ok, but his lung would collapse and require him to be intubated again. After the 2nd time of him being reintubated I asked the doctor if a tracheostomy would fix this? He said it would make the issue more manageable until AJ could come off the medication. Much to the doctor’s surprised I said, “Then let’s do it!”. For me the choice was an easy one as this would give him quality; with ability to see life outside of the hospital. A few days later AJ had his trach! It’s amazing how things that would previously scare you and destroy can have the exact opposite effect on you when they suddenly are seen as a sign of hope, and that’s exactly what the trach was for AJ!
After many more ups and downs AJ eventually came home for the first time October 5th, 2017! He came home with a boat load of equipment and supplies (Trach, vent, oxygen, pulse ox, IV medication, TPN, Ileostomy, Intracardiac line and left femoral picc line). He undoubtedly was one the most complex patients the hospital had ever sent home and truth be told he was sent home more so as a hospice patient than anything.
In typical AJ fashion though he has surpassed everyone’s expectations over the years and continues to keep us on his rollercoaster of ups and downs. He has progressed enough to not have most of the “accessories” he came home with, but his trach seems to be one he doesn’t want to let go of, which is just fine with us! His medical needs have just become part of our life and family, all his siblings jumped right in and quickly learned how to suction, start a feeding pump, change a trach and every aspect of what it takes to keep their brother going.
We have been able to make incredible memories and go on the most amazing adventures. Some may say it’s encouraging to see all that he does despite his trach, but I like to tell them that it’s BECAUSE of his trach we have the ability to make these memories possible!!!