While in the NICU there are many decisions that you easily defer to the doctors’ recommendation. There are others, however, that takes a little more consideration. One of those more thoughtful decisions, for us, was whether or not to take the Neonatologists’ recommendation that Owen get a Nissen Fundoplication (I’ll call it Nissen, since that’s what was used by Owen’s medical team, however, others call it a Fundo).
As with any medical procedure or diagnosis that I write about in this blog, please keep in mind that I’m a mom with no medical training. My sample size is one. I’m not recommending, nor am I qualified to recommend, that anyone do or do not get a Nissen. However, I wanted to share our story solely from the perspective of WHY we chose a Nissen for Owen and to discuss the RESULTS after one year. My hope is that other parents who need to consider a Nissen may glean some questions to ask their doctors. I’m also interested in hearing others’ experience with Nissen decision-making and results.
What is a Nissen Fundoplication: A Nissen is a surgical procedure that wraps the top portion of the stomach around the esophagus to strengthen the valve between the stomach and the esophagus. The purpose of the procedure is to reduce/eliminate stomach acid from backing up into the esophagus (Reduce GERD/Reflux Symptoms).
Why was it recommended that Owen get a Nissen? As Owen worked his way to full feeds, his oxygen needs and respiratory status were worsening. He was showing extreme discomfort and arching frequently. Typically prescribed drugs were not helping. Also, he had a couple very scary episodes where he stopped breathing and had severe heart rate drops while he was being fed. After the second time, I said no more feeding him until we have a solution. The doctors suspected that Owen was aspirating on his reflux and made the recommendation for a Nissen.
How was the surgery? First, let me say there are two types of Nissen Surgery – Open or Laparoscopic. Owen required the open procedure due to this being his fourth major abdominal surgery in four months. He also, received his g-tube during the same operation. With all that in mind, the surgery was hard on Owen. He was on the ventilator for 7-8 days post op. Due to the many operations he’d already had in his short life, he had built a tolerance to pain medications and was on very high levels of narcotics to keep him comfortable. Also, Owen had a history of requiring a lot of blood product during surgeries, and this was true for his Nissen. Receiving blood adds fluid to the body. So, the vent was partly due to sedation levels required and partly due to fluid in the body and mostly due to Owen’s lungs being in rough shape to begin with. We were told that many, healthier, kids do not need the vent post op.
What are the outcomes for Owen? For Owen, the procedure seemed to be the magic bullet that allowed him to eat, be pain-free and his lungs to improve. Just two weeks before the procedure, we were told that the timeline for Owen going home could easily be Thanksgiving or Christmas. After having the procedure, Owen went home in less than three weeks, which was almost 2 full weeks before Halloween. One year later, he has not since had issues with reflux.
What are the side effects for Owen?
- Owen cannot burp. If he has excess air in the stomach, we need to vent him through his g-tube or he can have severe gas pain.
- When Owen needs to throw up, he can’t. He only retches. The retching appears to be painful. To help minimize retching, we run his feeds very slow. He gets his feeds over 45 minutes to an hour. If he’s sick, we slow it down even more
- I’ve also seen him on a couple of occasions (gross warning!) convulsing like he’s going to throw up, but it comes out the other end. From his reaction, I believe this type of throwing up is much more painful than what most of us experience.
- Since the surgery, if Owen starts crying really hard, he will often start coughing/gagging. I don’t know if this issue is a typical response. The theory is that because his esophagus is narrower, the overflow of saliva from crying gets backed up and he coughs to protect his airway. When he cries really hard, I often have to lay him on his stomach across my lap and pat his back to help send the saliva out his mouth.
If you’ve had to make a decision on a Nissen, what did you decide and are you happy with your decision? Why?© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster