Nissen Fundoplication in Children: What to Expect from a Parent's Perspective
Preparing for a Nissen Fundoplication Surgery
Anti-Reflux Surgery: Our Son's Background
My four year old son has struggled with severe acid reflux disease from birth. While most babies with gastro-esophageal reflux disease vomit frequently, our son did not (he had a form of reflux called laryngopharyngeal reflux disease, or LPR). The stomach acid that washed up his esophagus ended up in his airways and sinus passages, and caused significant damage to the delicate lining of his esophagus. He was placed on a proton pump inhibitor and an acid blocker, but the medication was not enough to control the acidity of his reflux. He was failing medical therapy, with disastrous effects.
In the end, we were faced with a surgery to physically stop the reflux from occurring in the first place (you can read about our decision-making process for the fundoplication HERE). A procedure called a Nissen Fundoplication wraps the top portion of the stomach (the fundus) around the esophagus, tightening the junction between the stomach and esophagus.
Stitched into place, the fundoplication would prevent acid from spraying into his airways and worsening his already severe sleep apnea.
Nissen Fundoplication: Consultation with the Surgeon
The first step in the surgery process is the referral and initial consultation with a pediatric surgeon. The surgeon will discuss the surgery, the particular risks for the child in question, benefits, and any additional procedures that may be performed at the same time (such as placing a g-tube).
In our case, we were told that there was a very good chance the surgery could be performed with minimal access, or laprascopically. This means that only 5 tiny incisions are made to perform the surgery, which makes the recovery time faster. We were told to plan on a 5-10 day hospital stay, and that a g-tube would be placed in our son. The surgery date was scheduled, and the hospital made reservations at the Ronald McDonald House for our family, so that we would have a low-cost place to stay while our son was in the hospital.
Understanding Fundoplications: Video
Open vs. Laprascopic Fundoplications
Every case is unique, but surgeons generally try to perform fundoplications with a laprascopic technique. This leaves the child with five very tiny scars and a faster recovery time. In some cases, when the surgeon cannot get a good view of the abdomen with the laprascopic technique, an open procedure may be performed. The recovery time is much longer for an open surgery, and there will be a longer incision vertically down the child’s abdomen.
Picture of a G-Tube (Mic-Key Button)
G-Tube Placed with Fundoplication
In infants, gastrostomy tubes (g-tubes) are typically placed as a matter-of-course with fundoplications. With older children (similar to my son’s age), they are typically not placed unless the child is failure-to-thrive and needs supplemental nutrition. This varies widely by the surgeon: some surgeons routinely place g-tubes with fundoplications, and others rarely do.
My son had a g-tube placed for venting: he uses a continuous positive airway pressure (C-PAP) machine to maintain his breathing at night. This machine forces air into his throat, and many children swallow air from a C-Pap machine. Since the fundoplication would make it difficult for him to burp or vomit, we needed a way to release air from his stomach: the g-tube was placed as a way to vent off the air.
After having two bouts of attempted vomiting and venting on a daily basis, I cannot imagine doing this surgery without the g-tube. It has kept him out of the hospital on more than one occasion, as we were able to rehydrate via the tube, alleviate pain, and reduce bloating.
Tubie Friend: Great for Preparing Kids for G-Tubes
Preparing our Son for Surgery
Preparing a child for surgery can be extremely difficult. How much do you tell a child, and when? For very young children, the child life department at our hospital recommends telling the child only a day or two before the surgery. Preschoolers do not have a good concept of time and don’t understand how long a “week” or “month” is. We told our son about his surgery two days before the actual event.
Since he was going to have a g-tube placed, we struggled with how to tell him about these devices. He was going to wake up with a strange new addition to his body, and we simply didn’t know how to help him understand what a g-tube was. Fortunately, we found Tubie Friends – a charity dedicated to helping children understand g-tubes (and have a friend with the same “accessories” they have). I contacted the organization and Nolan received his Tubie Friend shortly before the surgery. His tubie friend was a puppy that he immediately dubbed February, and February was outfitted with a Mic-Key button (the same device our son would receive). Our son was able to play with the toy and give the puppy “medicine” in the tube before his surgery. He had a basic understanding of what a “button” was and was familiar with the concept when we talked about his own button.
Waiting for Surgery
Our Son’s Nissen: Arriving at the Hospital and Pre-Anesthesia
My son’s surgery time was early in the morning, which was a relief. This was his eleventh sedated procedure, so we were very aware that he would not be able to eat for at least 12 hours prior to the surgery. We woke him very early to give him the last clear liquids he was allowed to have (4 hours before surgery), and headed over to the surgical floor at his hospital.
We had already done the admission paperwork over the phone, so there was no paperwork for us to do at the hospital. We checked in, and within minutes he was called back to the pre-anesthesia area of the hospital. They did pre-surgical vitals, which included temperature, blood pressure, weight, and a listen to his lungs. We had his surgery performed at a major children’s hospital, so the child-life department brought play-dough and other toys to keep him occupied during his wait.
The surgical team arrived about half an hour later to take our son to the operating room. It was extremely difficult to watch him get wheeled away in his hospital bed, though he was very brave and didn’t cry as they took him away. We were sent to the waiting room with notification that they would call when they got started, and every 2 hours after that.
Surgical Waiting Room Tip
Surgery can be a long and exhausting process, and the wait is excruciating as you are desperate for any word from the surgical team. Make sure you get something to eat during the waiting process, bring something to distract yourself, and have a good support system. You want to be at your best once your child is in recovery, and you won’t be able to leave their side to get something to eat for quite some time after they wake from surgery.
The Long Wait: How Long a Fundoplication Surgery Takes
We were told the surgery would take 4-6 hours. 45 minutes after our son was wheeled away to the operating room, we received the first call that they were getting started. We were a bit surprised at how long it took them to “get started,” but it was a relief to get word from the surgical team. We knew it would be at least two hours until we heard from the team again, so we went to get breakfast. Two hours later, we received another call that the surgery was underway and was going well. Two hours after that call, the phone rang and said they were nearly done and the surgeon would be out to see us soon. Fortunately, the surgeon appeared 45 minutes later and told us the surgery had gone well, was done laprascopically, and that we could see our son in the recovery room. He also whipped out rather grisly pictures of our son’s stomach (taken in the operating room) and showed them to us. As a warning to other parents, if you are faint at the sight of blood, tell your surgeon to save the pictures for his files!
Waking from Anesthesia Post-Fundoplication
In the Recovery Room, Post Surgery
We walked into the surgery room and our son was quite uncomfortable. They had given him morphine, and he had an I.V. in his arm that bothered him. He also had a foley catheter to empty his bladder, and he was uncomfortably warm (some children feel “hot” when they are coming out of surgical anesthesia). Fortunately, the nurses were given the go-ahead to remove the catheter fairly soon after surgery, which made our son a lot more comfortable. The I.V. would be in his arm for the long term, though. Our son stayed in the recovery room for about an hour, then was moved to the Pediatric Intensive Care Unit (PICU) – most children would go straight to the regular ward, but since our son uses a C-Pap machine, the team wanted to closely monitor his ability to breathe with the machine in conjunction with the fundoplication surgery.
The First Days of Recovery
The Pediatric Intensive Care Unit: Days 1-2 Post-Surgery
The next two days were extremely difficult. Our son was thirsty and would beg for juice or water, and we couldn’t give him anything to eat or drink. He wasn’t even allowed ice chips! If anything disturbed his stomach and caused him to retch (attempt at vomiting), he could undo the new stitches that were keeping the fundoplication in place. The nurses reassured us that he was getting enough liquid via his I.V. line, but that didn’t help the sheer misery our son was going through.
During this time, they were weaning him off of morphine onto regular Tylenol. This was a difficult process, and he refused to walk because he was in pain. While many children cry when they are in pain, our son simply became non-talkative and withdrawn. The nursing team didn’t recognize this as a pain signal, until he finally collapsed and screamed as they were trying to make him walk. This was an extremely difficult time for our family, and we were simultaneously exhausted, advocating for our son, and heartbroken to see him in pain and begging for a drink.
Fortunately, the O.K. was given for him to have a drink of clear liquids after about 48 hours had passed. He was allowed tiny sips at first, and was fine. He was so relieved to drink apple juice and have popsicles.
The PICU had a wonderful arrangement for the parents – there was a long couch for one parent to sleep on while the other parent either went home or to the Ronald McDonald House. I was quite grateful for that couch, as I never had to leave my son’s side.
Recovering from a FundoplicationClick thumbnail to view full-size
Moving to the Regular Ward: Days 3-5 Post Surgery
Once our son demonstrated that he could keep his oxygen levels up at night, could drink fluids, and could walk, he was moved to the regular pediatric ward. This was much better for him, as there was a playroom on the floor and the surgeon gave the approval to try soft foods.
Unfortunately, with a fundoplication, eating can be difficult at first. Children need to learn to chew their food really well, or else it can get stuck in the esophagus at the level of the wrap. This is extremely painful, and the child will choke and gag until they can cough the piece of food back up. If the piece of food is too large to come up on its own, it must be surgically removed. Our son was allowed to have macaroni and cheese, and we monitored his bites very closely. We only allowed one noodle at a time, and continuously reminded him to chew it well.
There was more than one occasion where he would grab a spoonful and sneak it into his mouth. When he swallowed, he would start drooling and turn pale, then curl up on his side as he tried to cough it up. It was horrifying to watch as a parent. Our surgeon compared the level of pain to a heart attack when this happened – fortunately he learned to chew his food very quickly.
We learned how to care for his g-tube while we were on the ward, and my husband and I took shifts between the Ronald McDonald House and the hospital. The regular pediatric ward had shared rooms and nowhere for the parent to sleep. I ended up sleeping in the hospital bed alongside my son.
As he continued to recover, we kept him entertained with toys from the child-life department, toys we had brought from home, and our tablet computer. He also loved the hospital television, as the sound came out of the remote control and he could hear it very well through the speaker (he is hard-of-hearing and has difficulty hearing our television at home).
The day before we left for home, we were able to give him a bath. It was such a relief to get the adhesive bandages off of his tummy and to wash his hair! We were discharged on the fifth day, and everyone was relieved to go home.
Long-Term Recovery from a Nissen
Nissen Fundoplication Poll
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Recovery from a Nissen Fundoplication: At Home
Once we were at home, we had a few concerns. While the surgical incisions healed quickly (within 2 weeks), the internal rearrangement of his stomach took a lot longer to heal. Our son didn’t want to eat, so we were told to keep a food diary. After a while, we realized that he needed to have his stomach vented, as he was getting bloated.
We had a retching event the first week after he was home: he retched continuously for 5 hours, and it was horrific. We are still not sure what brought this event on, but it left him in considerable pain for the next three days. He recovered from it and hasn’t retched since that point in time.
One month after surgery, he came down with the stomach flu. For a child with a Nissen Fundoplication, this is a terrible illness. He retched forcefully, but could not vomit. We consulted with his pediatric surgeon and our pediatrician’s office, and were told to vent through his g-tube. Unfortunately, the retching and continuous venting (which emptied all stomach contents) left him significantly dehydrated. He wound up in the pediatrician’s office, and the retching finally stopped. We were able to rehydrate with Pedialyte through his g-tube, which saved us a trip to the hospital for I.V. rehydration. Many children are sent home with a prescription of Zofran (Ondansetron) to alleviate nausea in the event of retching or the stomach flu. My son was not given this medication by any of his doctors, which made the effect of the stomach flu worse than it should have been.
Two months after surgery, he is able to eat any food he wants and food does not get stuck. We do have to vent his g-tube to relieve air pressure inside his stomach, and his weight has not increased since the surgery. We are monitoring his progress closely. We should be able to wean his anti-reflux medications in the next few months. He has not had a single ear infection or sinus infection since having the surgery performed, and no longer chokes on his reflux. His lungs are nice and clear, and we now have the hope that his airway will heal enough to discontinue the use of C-Pap at night.
A Healthier Child: Post Surgery
Nissen Fundoplication: Was It Worth It?
For our son's very specific situation, his Nissen Fundoplication surgery was worth the side effects and the recovery process. Now that he is fully recovered, his main "difficulty" continues to be gas bloat, or air trapped in his stomach. The reflux, however, is gone. He will not get esophageal cancer, his airway can heal, he won't get constant sinus and ear infections.
The situation for each child varies dramatically - the surgery is extremely difficult and can result in disastrous side effects for some children (like uncontrollable retching). Children with neurological problems are generally not good candidates for the surgery and are more likely to suffer from these side effects. Parents must carefully weigh the potential side effects of the surgery against the effects of the acid reflux: for most children, a fundoplication surgery is not warranted. For a minority of children with severe acid reflux that is unresponsive to medical therapy and causes airway damage, life threatening events (apneas), or pre-cancerous cellular changes to the esophagus, the surgery may be warranted.
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