The three days following Luke’s scan felt like a lifetime. Monday evening, I finally got the call from his GI who had looked at his scan and ultimately decided that surgery was going to be the best course of action. The plan was to fix the hole in his diaphragm and perform an additional procedure called a Nissen Fundoplication. Everyone has a muscle at the bottom of their esophagus just above their stomach that opens to allow food in and closes to keep it there. Luke’s muscle was so stretched out that it wasn’t doing its job to keep things down. The Nissen would take the top of his stomach and wrap it around that muscle to help support it and help reduce the reflux.
Now that we knew the “why” and the “what”, our next step would be to meet with the surgeon. Once again, this appointment was only one parent allowed. We did our best to discuss everything beforehand, as well as having Daniel facetime into the appointment. We felt as prepared as we could. The surgeon explained the same things GI did just a little more in depth. However, neither of us were prepared for him to also include the added need for a feeding tube to be placed. This new news completely knocked us off our feet and all the sudden I lost all sense of preparedness. The tube was basically an added safety valve. One of the risks you take with a Nissen is that it makes burping and expelling gas harder. Luke being so young meant he wouldn’t be able to communicate if he couldn’t get gas out and so this gtube would allow us to vent directly from his stomach and allow air to escape. The plan would be to have it until around five years old or until his surgeon felt he could communicate on his own.
We went home with way more information than we expected. We did our own research, met with his pediatrician, met with his GI again, prayed and ultimately decided that this was the best option for Luke. This surgery, however scary, would improve his quality of life in a way that no amount of time or medicine could. In less than a month we had diagnosed him and scheduled surgery.
The week of surgery we got a call from the hospital to confirm everything and go over details. They confirmed time of check in, length of stay in the hospital, instructions for the 24 hours prior, and that TWO parents could accompany him into the hospital. This was such an answer to prayers.
We got to the hospital early on a Monday morning. We sat in that dark parking lot and prayed over Luke and the surgeons. We checked him in and got lots of snuggles and smiles before we handed him over to a nurse who would help take care of him for the next several hours. I checked the surgery board every thirty minutes until it finally said, “in recovery”. We met with the surgeon who talked us through the process and reassured us that everything had gone well. I was able to go back and meet him in recovery while we waited for a room to open.
His hospital stay was three days. This gave him the time needed to recover and us the time to learn how to care for his gtube. The following few months took a lot of adjusting and learning a new normal for all of us. It’s been almost a year since surgery and while it hasn’t been easy, I’m thankful that for the progress and healing that has come.
