My kid needs a heart transplant. Those are hard words to hear. 17 1/2 years ago, Ethan graced us with his presence. He was a healthy little 8 lb 4 oz boy. He was a good little baby. He was friendly, usually only cried if hungry, tired or soiled. When he was 8 months old, Ethan was diagnosed with Shone Syndrome. It was found by accident. He had the sniffles and I wanted to make sure he was going to be healthy enough for his upcoming inguinal hernia repair. His doctor detected a murmur. She called and got us an appointment within 2 hours at pediatric cardiology.
6 hours later......He had a narrowed mitral valve, narrowed aortic valve, bicuspid instead of a tricuspid aortic valve and a narrowed aorta. His aorta was so narrowed that he needed to have surgery. He had to have the narrowed portion removed and the aorta re-attached so he could get normal blood flow to all his cute little fingers and toes. They cut his blood supply off to his brain for 11 minutes. We were told he may be delayed, he may be mentally handicapped etc. He spent 5 days in ICU one of which he crashed and had one of his lungs collapse. His last day was on the regular floor before we were sent home. They cut my baby in half through his ribs and he had a chest tube.
After that surgery his personality changed. He suffered from PTSD for at least 6 months. It was hard.
Ethan had a myriad of health issues over his 17 years. All manageable, but each one came with its own level of stress. His sister, Avery, was born 2 1/2 years later. Luckily she did not have the same syndrome and was deemed healthy.
Ethan had issues with viral induced asthma, pneumonia, still had that hernia that needed to be fixed, sleep apnea, he had his tonsils and adenoids removed, he walked on his toes, etc....this kid is a mess. I like to call him "perfectly imperfect" as well as a "medical disaster".
His heart would get monitored once a year. All was good for a number or years. Last year, he had some wonky readings on his echo but not terrible.
Let's talk about this kid for a minute. He has been determined to have a successful Youtube channel for the past 6 years. This is his video announcing his current state. Ethan shares news that he needs a heart transplant. We have been looking on the bright side of things his entire life. It made me so proud to watch his video. Some of the information was a little inaccurate but his message was clear. He needs a new engine.
He has been successful with this. The kid that had a good chance of being "mentally challenged" had an overall GPA between 90-100% from 6th grade on.
This kid saved his money for years so that he could buy a car and restore it with his dad.
Ethan also tinkers with anything with an engine. He has transformed a pedal car into a battery powered go cart. He has a need for speed. He loves 4-wheelers, snowmobiles and recently riding a jetski.
He went in for his echo in March 2020. Yikes, things didn't look so good. I have been dealing with the medical profession long enough that when you have to wait for a long time for the cardiologist to read results, it's not good. Luckily I braced myself, thank god, but I was not ready for what I was about to hear. Everytime I think I am prepared, it's like a game, the doctors see my preparedness and raise their game 1000%. Ethan needs a heart catheterization. That's scary. They stick things that shouldn't be in his heart....in his heart.
Ethan was scheduled for a heart catheterization. With this procedure a long tube (catheter) was placed into a vein and an artery in Ethan's leg near his groin so that the doctors could collect information about his heart. Just what you want to discuss with your teenager....shaving his groin to prepare. We both had fun with this conversation (sarcasm).
Ethan had some blood tests, some genetic testing as well as his procedure. We were then told that Ethan had heart failure. He also had a disease of his heart muscle called a cardiomyopathy. Because his heart was "sick" he needed to have a defibrillator implanted. He was at risk for sudden death without one. Also, his numbers were so bad (wait...did the doctor just say ALSO?) that he needed to be sent for evaluation by a pediatric heart transplant team. WTF??????
Jesus! How did this happen? He seems healthy. I mean, he sometimes was short of breath but we thought it was because he had some other typical ailments going on.
Did I mention this kid has terrible timing? This was all going on through the start of the pandemic of 2020. All of these tests and procedures only allowed one parent to be present. Oh yeah....and I also decided of all times, with a heavy heart, to make some changes with my professional life and change jobs. Throw in a side of insurance interruption....super fun times. Paul, my husband, was furloughed like many other American people but luckily, my job was deemed essential.
Ok kid...let's go through in a health crisis in the middle of a pandemic and quarantine so that we can visit COVID central, the hospital, multiple times. Not stressful at all.
June 2020, after we straightened out insurance information, Ethan had his defibrillator/ pace maker implanted. We scheduled a heart transplant evaluation in July at Children's Hospital of Pittsburgh. I arranged my work schedule even though I was a newbie. Unfortunately, our insurance decided that was out of network. Although it would be 2 1/2 hours closer for us to drive, after the third attempt for us to get approved for CHOP, we were denied again. What a waste of time. We were really disappointed.
Getting all this news over a short period of time is hard. We had to tell Ethan and Avery. We had to tell family. We had to tell friends. We were overwhelmed with the support we received.
One thing that I always have said and will continue to say is "Look on the bright side.” " Look for life's gifts.” When you think the world is against you, maybe the pieces to the puzzle of life are still being put together and things don't make sense.
One gift we received as we were "looking on the bright side" of this whole situation. Thank goodness he was born with Shone Syndrome. Cardiomyopathy is one of those silent killers that kids fall over dead in gym class. Had we not gotten that diagnosis 17 years earlier, Ethan may have had his time cut short on this earth. That would really piss me off. I have put a lot of work into this kid to make him a functioning member of society.
The reason I have created this blog is because I know that times are going to get tough before they get better. Ethan has a battle he has to fight. We are prepared to go to war for this kid. I wanted a place for family, friends and other people that have to go through this to read about this journey. It is easier for me to have one main place for everyone to go for information. Who knows, maybe I will turn this into a book some day.
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