Getting 'Tubed

The Tale of Tucker's GI Surgeries

Tucker had problems with reflux from birth (1993). However, until his esophagitis became severe, we never had problems getting breast milk, formula, or baby food into him. The problem was keeping in it. He gained weight, but remained on the low end of the growth charts. Once he had weaned himself, he began vomiting a large portion of each formula feeding and his chronic eczema worsened. He began having seizures. (We were ignorant of the effects of food allergies at that time, and Tucker's pediatrician kept referring him to a dermatologist -- rather than an allergist.)

When Tucker was 18 months old, we moved from Dayton, OH to Morgantown, WV. Tucker's new pediatrician took one look at his eczema and referred him to an allergist. Numerous food and environmental allergies were diagnosed. We switched immediately to a soy formula and the eczema vanished. The vomiting persisted, though.

By 2 years of age, Tucker was taking his formula feedings from a cut-out cup & had no problems with dysphagia (abnormal swallow). He could also eat a jar of baby food with gusto. However, he would then vomit 30-60 minutes following the meal. We had fought the idea of a fundoplication for as long as possible, but we knew it might be necessary. We were told that a fundoplication could not be performed without a gastrostomy (g-tube) because Tucker would need the ability to "burp" (vent gas) via the g-tube. A milk scan showed "delayed gastric emptying" so a pyloraplasty was added to the list as well.

The surgeon was convinced that the procedures would make everything better. Her enthusiasm was infectious. We began to hope that Tucker would soon be free of his major GI problems. We were told that gastrostomy would be temporary and that once he  demonstrated the ability to burp naturally, it could be allowed to close.

The surgery was performed in February 1996 at WVU Children's Hospital. It went very well. We were a bit surprised at the location of the g-tube, because it was low on the abdomen and didn't seem as if it could possibly be going into the stomach. Instead, it looked as if it went directly into the intestines (or jejunum) -- and was thus, a jejunostomy. The rationale behind the placement was never explained to us and, at the time, we were too naive to ask.

Tucker seemed to be recovering nicely. However, a few days after the surgery, his abdomen became distended and an x-ray showed a small bowel obstruction. He was rushed back into surgery. The obstruction "resolved itself" once the incision was reopened, and it is our firm belief that the placement of the g-tube CAUSED it.

During that 2nd surgery, the g-tube site was changed and situated where one would expect a tube to enter the stomach. The button was replaced with a latex Foley catheter, and we were told it would be switched for a button in a few months.

About a week after the 2nd surgery, Tucker developed a dehiscence at one end of in his incision. (The same incision had been used for both surgeries.) That evening, the surgeon was there on rounds, and we were standing around Tucker's bed. He was explaining that the dehiscence would result in a hernia which could be repaired at some future time. As if on cue, Tucker yawned and stretched.  His abdominal incision opened like a zipper, and his intestines popped out. To this day, I can still hear the sickening slurpy sound of the evisceration.

So, Tucker was rushed back to surgery for a 3rd time in less than 3 weeks. Everything was put back into place. The fundo, gastrostomy, and pyloraplasty were checked. He was taken to the PICU for a few days post-op to watch for any complications, then to the "step down" unit, then to a regular room. One week later, he was discharged.

Soon after returning home, we discovered that all the trauma he'd experienced had resulted in the loss of all of his oral motor skills. We had no alternative but to use the g-tube for feedings. The recovery process alone took every bit of 6 months -- during which time Tucker would retch horribly after feedings. He no longer could vomit, but he certainly went through the motions. We were afraid that he'd blow his fundo or rupture his incision, but thankfully that did not occur. We were treated to an explosive, watery BM after every bolus feeding. No one had even suggested that a feeding pump could be used to deliver the formula slowly. We had to learn on our own that the rapid emptying of the stomach into the intestines can cause "dumping syndrome."

We also learned that Tucker has a latex allergy.  A nasty rash and the development of excess granulation tissue around the g-tube site resulted in the replacement of the latex Foley catheter with a silicone version, which fixed the problem almost immediately.

Gradually, the diaper "blow outs" and the frequent retching diminished. The dysphagia, however, persisted. With the help of e-mail support groups, we learned about feeding pumps and did try one for a while. In time, it became evident that Tucker's retching was tied to aggravation of a hiatal hernia and, at times of increased congestion, mucus triggering his gag reflex.

In the late summer, about 5 months post-op, Tucker's g-tube was replaced by a Bard button.  A year or so later, the Bard button was replaced by a MIC-KEY button, which is the type he has to this day.  We dress it with a DuoDerm patch, and he has not been troubled by irritation or build up of granulation tissue.

Hindsight being 20/20, if we could go back in time, I think we'd perform the pyloraplasty first ... because it was probably the delayed gastric emptying that was causing the excessive reflux and vomiting. The fundo and g-tube may have been completely unnecessary ... and Tucker would still be eating by mouth. Who knows?

The tonsils also played a role in triggering that hypersensitive gag reflex.

Of course now there are improved, less invasive methods of performing a fundoplication which do not require a large abdominal incision.

Tucker continues to have regular therapy to address his dysphagia and oral motor skills, but the progress is very slow. He is still fed entirely by g-tube and now takes an (expensive) elemental formula.

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