Patrick was born prematurely at 32 weeks. We were told he would just need to learn to eat and breathe on his own and then he could go home. Two days later the news came that they heard something abnormal and called in the cardiologist. At that time the nurse said we would need to meet with them in the morning to discuss what they found.
Three hours later, the NICU attending doctor stood with us telling us what he could about Patrick so we had some idea what was coming in the morning. The cardiologist had a picture of a normal heart and marked all the abnormalities that they knew at the time and explained them. He told us they were going to try and get Patrick to grow as much as possible to give him the best chances of surviving his first surgery.
We only got to hold Patrick a few times in the two weeks before his surgery. We saw him turn blue several times during those two weeks. The doctors decided they couldn’t wait for Patrick to grow. The day of his surgery we got to hold him for a short time, “just in case.”
A little over two weeks later we walked through our front door for the first time as a family.
At 2 1/2 months we found out what Congestive Heart Failure meant in a child. We were in the hospital for 4.5 months out of the first 7 months of Patrick’s life. When we weren’t at the hospital we were either at the pediatrician’s office, cardiologist or calling them to give updates. A week before his first Christmas, I asked the cardiologist if he was going to make it, a question no one wants to ask but I just had to. He said they would do everything that they could.
Patrick had his second surgery at 6 months. The doctors wanted him to be bigger before surgery but he was struggling so much to survive they again said they couldn’t wait any longer. A week and a half later they discovered they needed to go back in for another surgery.
The night before his third surgery he was struggling to breathe so much that the hospital bed was shaking to the point that we were leaning on it to try to keep it still. We stayed awake all night praying he would make it to have the surgery.
Two and a half weeks later we went home.
At Patrick’s one year “well-child” visit, his pediatrician said there were a few times they weren’t sure he would make it to that day.
Patrick had his fourth surgery at 4 years old. At that time because of the medicine he is on we had to give him shots twice a day for a few days before and after surgery to transition him back to his medicine. He looked like a pin cushion by the time we were done because each spot bruised.
At one point after surgery I asked what leg he wanted the shot. His response, “Mommy’s.” I told him I would if I could.
If all goes well he will only need one or two more surgeries. He has now been diagnosed with atrial fibrillation.
My heart skips a beat when the caller ID shows the school calling. Every time Patrick says his chest hurts or something just doesn’t feel right, the thoughts immediately turn to, is it his heart? The cut on his knee that we told him was ok and just needed a few days to heal wound up sending us to the hospital for a week. It got infected, spread quickly, required IV antibiotics and triggered his atrial fibrillation. Every cut and bruise needs to be watched, “just in case.” He has to take antibiotics in order to go to the dentist. He takes medication daily and tests his blood either weekly or biweekly, depending on the results.
Everyone he meets says he has a great personality and demeanor. He wants to be friends with everyone. He loves helping others. People ask how we made it through. My response is simple, “you have to, there is no choice.”
We put our hope and faith in the doctors and nurses that have taken care of him on his journey so far. Our families and friends have helped us get through some tough times. Patrick has made me a stronger person.