12/16 - G-Tube

Around 10:30 a.m. they came and got Leo and took him down for surgery.  Normally he enjoys field trips in the transport bed, but this time he was extremely upset crying and wiggling all around.  We felt really bad for the little guy and thought.......this is not a good start to the day.  We went down with him and met the anesthesiologist. They then directed us to the surgery waiting room.  There they give each parent a pager and a number to track the patient's progress on monitors placed throughout the room.  It's kind of like waiting to be seated at a restaurant in the airport. Around 12:30 the surgical nurse called me and said Leo was doing well and the doctor was just finishing up.  Our pager soon went off and we had a brief meeting with the surgeon.  He said everything went well and they were trying to get him off the ventilator. NICU babies just recover in their room after surgery so after about another hour we were able to go back to the room.  When we walked in we were super happy to see he was OFF THE VENT!  This is great news because he really struggled to get off it after his first surgery.  We are praying he can continue to improve his breathing over night. He is on a lot of painkiller right now and just resting comfortably.

A little more information about his G-Tube and Surgery......
In addition to having a feeding tube surgically placed in his tummy, Leo also had Nissen fundoplication. This is a more complicated procedure where they wrap the upper part of the stomach around the esophagus. The Nissen is a treatment for extreme acid reflux. It basically prevents anything from coming back out of the stomach. There was debate about whether or not Leo should have this procedure. Leo has never vomited or even spit-up, but we think he was experiencing reflux.  He would frequently cry, arch his back and spit bubbles during and after feedings. Since he has never even spit-up, his surgeon's initial reaction was that he did not need the Nissen.  However, he took some time to consider the reflux signs he does have as well as the dangers associated with Leo's poor gag and swallow.  If Leo were to ever vomit, we are not sure if he could protect his airway. He could aspirate into his lungs and choke. After full consideration, the surgeon strongly recommended the Nissen and we agreed to it. Kids with TEF often have a hard time swallowing and getting food down their repaired esophagus and they normally do better with a partial (270 degree) Nissen instead of a full (360 degree).  Therefore, we did the partial and Leo still should be able to vomit and burp if he needs to the future, but the reflux should be controlled. The Nissen has its cons. They often come undone and need to be repaired. They are also a permanent feature after completed the first time. Most kids (at least ones without TEF) grow out of reflux overtime, but we took that opportunity away from Leo. We really wanted to protect his airway and prevent choking, but hope it doesn't cause extra problems long-term.

In the next day or two, they are going to have us take over his G-tube feedings and we will post more about how that works. Hopefully he keeps up the good work with his breathing and we can keep the good news coming tomorrow.

No feeding tube in my nose!