Since our son Will was born in May, he’s had open heart surgery and an additional three procedures that required him to be taken from us and operated on.
This isn’t intended to be a comprehensive recap of his health issues, but really some thoughts on what my wife and I have learned from him and others over the course of his four surgeries in his short life. Considering all these procedures, we’ve only spent 12 nights in the hospital (not counting 11 days in NICU following his birth).
–It could always be worse. During our time in the CVICU and CCU following his heart surgeries, we saw many kids with much more severe health issues. They are waiting on heart transplants, bone marrow transplants, and fighting cancer. It’s sad and inspiring to see them around the hospital and forming friendships with the other kids in similar situations.
–He squeezes out a smile whenever he can. The little fella has been poked and monitored so much that it seems he’s barely fazed now. And to see how resilient he’s been has been almost puzzling. Although he’s clearly been in some pain, he’s such a happy kid and won all the nurse’s hearts with his smiles and calm demeanor.
-His hair defies the laws of gravity. The longer it gets, the more it stands straight up. After surgery #1, Roz asked the surgeon if his hair was still standing up. He said no b/c he had a hat on. When we got to see him a short time later, his hair was back to normal. The surgeon told the nurses to fix his hair for his mom. That’s a good doc with actual bedside manner.
–Be flexible, don’t be disappointed when plans change. Prior to his first heart surgery in October, the surgeon told us to plan on 3 weeks to a month in the hospital. He ended up only staying 4 nights. So, it seemed almost easy. However, things didn’t stay smooth and fluid was found around his heart. It kept increasing, so it had to be drained, and then that didn’t solve the problem so they performed a pericardial window to hopefully permanently fix the issue.
Just when we thought all was well, more issues arose. This has happened several times, and then his third hospital stay was prolonged by RSV. Every time we thought we were going to get him home, we were wrong. So, we learned to be hopeful, but don’t get too set with our plans. We’ve had to cancel or change many plans and won’t be surprised if that continues. It’s okay though.
-Dreams sometimes come in unexpected packages. We, just like any couple, were excited for the birth of our 3rd son. My wife probably more so b/c she was so sick. We had no clue there were any health issues with Will before his birth, despite all the ultrasounds and genetic testing. Shortly after his birth–like a bomb, we found out he had Down Syndrome and an AV Canal Defect in his heart, requiring surgery in the next few months.
How did we take the news? Well, we didn’t smile and say “this is God’s plan”. It was tough. We struggled with the shock and uncertainty. So many unknowns. What will his future be like? What will our future be like? Will we ever get a good night’s rest?
However, he’s been such a blessing to our family. Not just our little family, but our extended families as well. He’s a happy, calm little boy that brings out pure love in those close to him. His body doesn’t have to be “typical” or “normal” for us to be in love with him. We know he’ll continue to teach us the rest of our lives. And little Will has two older brothers that will push and motivate him, so he’ll excel at whatever he wants.
-He’s endured pain bravely and been a fighter. His blood has been taken so many times that they just call in SWAT these days b/c his veins are so hard to find. Then to watch them suction out mucus from his ventilator is probably one of the toughest acts I’ve been present for. It looks so uncomfortable b/c I put myself in that situation and it would be awful–no one likes that choking feeling. Then his body has fought so hard to recover from the pokes, cuts, pain meds and multiple sicknesses. On top of this, he has tracheomalacia, which complicated the ventilator removal both times. And he has no problems ripping the hoses and monitors off him–he’s a strong little man. When new problems arise, I think he now says “What else you got?”
We were overwhelmed by the news from day 1, but we’ve felt such a spirit and strength from him since his birth. He’s special.
-Be an advocate for your children and trust your gut. If Rozlynn hadn’t acted on her motherly instincts, he may not be in the shape he’s in. Will wasn’t scheduled to see his cardiologist for two more days, but she got him in early, they found the fluid and said he needed to be admitted immediately to remove it the following morning.
At the same time, he hadn’t acted himself since his first surgery in October. She knew he was in pain every time he coughed. The docs said that shouldn’t be the case, but we had to stay on them to check. When they did the pericardial window, they had to repair his sternum and use stronger, stainless steel wire to hold it together. The surgeon said it won’t move this time. That’s why he was in pain–his chest wasn’t growing together properly.
-Pediatric nurses are a Godsend. Not much more to say here other than we received top-notch care from nurses who seemed to love their jobs. Children’s of Alabama is doing something right when it comes to hiring.
We’ll probably experience more adventures with this little guy, but I hope we learn to enjoy the journey and keep appreciating his relentless spirit.