I have frequently resisted the temptation to write about Kohl’s feeding problems on this blog for risk of boring you to death. But the temptation was there because Kohl’s travails with all things gastronomical have probably been the most stressful and most immediate concerns for Kohl and his gang. But Kohl just had a surgery that will hopefully spell the beginning of the end of the pain, discomfort and insomnia that Kohl’s feeding issues have caused. First, indulge me to relate a brief history of Kohl’s war on food.
Like many infants, he had reflux issues which caused stomach pain and caused him to spit up frequently. Such issues were made worse because of the damage to his brain, which controls every function including digestion and the way food moves through the stomach and intestines. Beginning about his eighth month, things took a turn for the worse. He started to reject breast milk, and we were forced to switch to a truly foul-smelling formula with a name that mercifully escapes me, lest I have flashbacks of its stench. This worked for about four or five months, but then his body must have finally realized how vile this substance was and started rejecting it too, spitting and/or vomiting it up with reckless abandon. Many sleepless nights and GI appointments later, we chose a soy-based formula. He was sold on soy for awhile, but having concluded that soy was for sissies and could potentially cause man boobs, his very manly stomach rejected it too.
Over time, this led to the beginnings of an oral aversion. As his little body continued to reject various formulas, he made the connection that this little thing on his face called a mouth caused him a lot of pain in the form of daily vomiting. He basically said, “you know what, mouth, f&!k you, we’re done.” While this was a positive cognitive sign, it was outweighed by negatives because it got to the point that he was sometimes only drinking eight or nine ounces per day and dropped way off the growth chart – putting himself behind in yet another developmental milestone. To add insult to injury, we had to start squirting his medicine down his throat which would cause him to choke and turn purple half the time. Not only was this a tortuous exercise for mom and dad, it made the war Kohl was waging against anything going in his mouth much worse.
This was a stressful time, and we tried every option on the table before finally deciding to go forward with the gastrostomy tube or “G-tube.” (Those who have been following this blog may be familiar with the description of Kohl’s G-tube through the majesty of ’90s hip hop). It is a plastic tube that has an external button on one end where food is injected and the other end runs directly into the stomach. The G-tube was miraculous because as soon as Kohl was getting enough calories, he started growing normally again and, perhaps most importantly, he finally started sleeping through the night. Also, apparently adopting his mom’s penchant for becoming “hangry,” his disposition showed tangible improvement once he was eating enough.
Another battle was on the horizon though because even though the G-tube ensured he was getting his calories, it eventually made his vomiting even worse. When we eat naturally, our mouths send signals to our stomachs that prepare it to receive whatever we happen to be eating or drinking. The stomach expands and prepares to receive the nutrients. When getting nutrition via G-tube, however, food is inserted directly into the stomach, which catches the stomach off guard. The stomach reacts by trying to dispose of that food, which is when Ralph and Huey come to visit. As a result, most G-tube surgeries are accompanied by a second procedure in which the top part of the stomach is wrapped around the esophagus which, in effect, prevents the stomach from regurgitating anything. In Kohl’s case, however, we were strongly advised against doing this because children with neurological problems tend to have serious complications with it.
Fast forward several months, and vomiting became an all-too-frequent part of the little fellow’s life. A day where he did not spit up or vomit at all was rare, and days where he only did it once were considered a win. So with the ultimate goal of weening him off the G-tube, we decided to move forward with his latest surgery which was replacing the G-tube with a “gastrojejunostomy tube,” (GJ tube). Instead of going directly into the stomach, the GJ tube bypasses the stomach and empties directly into the small intestine, significantly reducing the likelihood of vomit.
Kohl now gets all his calories overnight through a pump that connects to his GJ tube and slowly administers his food while he is in dreamland. During the day, Kohl will delve into the worlds of butternut squash, apple sauce and various pureed delicacies. Ultimately, we hope he will make amends with his mouth so that he can get his nutrition exclusively from food and enjoy one of life’s simple pleasures.
Let the culinary adventure begin.
