A simple surgery left him fighting for his life

So if you’ve followed my story my son has been in the hospital since birth due to a congenital diaphragmatic hernia. (CDH) He’s almost 3 months and has overcome so much from Ecmo (heart and lung bypass) to being intubated to having a bowel surgery that we almost lost him to.

Friday he was going in for a standard surgery that most CDH babies get. He wasn’t eating well and needing a feeding tube. These babies esophagus are also warped because of the hernia and they need a fundoplication surgery. Essentially a reflux surgery. It should have been his easiest surgery yet. It was his 5th surgery in life but the only one he went into healthy. Typically after this surgery discharge is 2-3 weeks away. After being in the hospital for 86 days now we were very anxious for discharge as you can imagine.

This was him Friday morning before his surgery.

He was happy looking around and content. Little did we know a 5 hour surgery would take a turn for the worse.

He came back from surgery and we thought everything was ok. It took longer than expected because he had so much scar tissue. All day he was struggling to breathe well (even with oxygen support) and his blood pressure was dropping dangerously low. They drew some blood and ran some tests and all his levels were low. They realized he must be bleeding internally somewhere and an emergency surgery would be needed.

So Friday night he went in for his 2nd surgery in under 24 hours. It was a 6 hour surgery in the middle of the night and we didn’t hear one update for the whole 6 hours. It was terrifying. The docs finally wheeled him back from surgery at 6:30 am Saturday morning. The source of bleeding had come from his spleen. They had done all they could do to save his spleen. He lost 800ml of blood (twice his blood level in his body) and it came to a point where it was lose the spleen or lose tanner. Obviously he chose to lose the spleen.

This was just minutes after he came back from that surgery.

So all day Saturday was the same as Friday. His blood levels were not good and he received several transfusions only for the blood levels to continue to drop. He got so swollen that he started not being able to breathe. It was decided that he needed to go into emergency surgery once again to control the bleeding.

Saturday night/Sunday morning at 2:30am they took him back for surgery. His 3rd surgery in under 48 hours. How much could one little body take?? That surgery was much quicker than the first. He was up in 2 1/2 hours. They found a lot of old blood and fresh blood. They put a wound vac on him and left him opened so it could suck any blood out before they close him up again.

He opened his eyes after this surgery so that was amazing. He is still fighting and they will take the wound vac out today or tomorrow to close him up again. Hopefully the bleeding has stopped. We are thinking he must have a blood clotting disorder of some type.

We never would have thought the healthy little boy in the pics from Friday would look how he does today. It’s been a long hard weekend for everybody. I’m praying this week shows great improvement and he pushes past this hurdle.