August 2004: Tom was a year old. A momentous achievement given his diagnosis of leukaemia and his considerable feeding difficulties.
We had been feeding him using the NG tube for four months by now, and his cheeks were constantly red raw from the tape used to secure the tube.
We also now had an overall diagnosis to explain all of his medical problems: our lovely, beautiful pixie child had and has Noonan Syndrome. One common aspect of this syndrome involves feeding difficulties, although the need for tube feeding is still rare among these children. It is still unclear why a child with NS struggles to eat, but absolutely acknowledged that the difficulty is real.
While lifesaving, the NG tube was now beginning to be difficult to live with. Tom hated it (imagine a tube constantly at the back of your throat) and there is little doubt that it contributed to his acid reflux. Our good quality tubes were designed to stay put for a week, but there are a range of reasons why they come out:
- Tom’s favourite: pulling it out of his nostril! I became adept at finding new and wonderful ways to use tape to make that difficult, but he kept up with me as his fine motor skills improved!
- A good sneeze: often enough to propel a good section of tube out of his nose which meant reinserting it to ensure the end was in his stomach.
- My least favourite: the vomit comet! If vomiting was particularly violent, the end of the tube would come out of his mouth, leaving me with a child who had a tube going in his nose and out of his mouth. I’m not sure why, but this always left me feeling really queasy.
Once he had realised that he could pull the thing out, our days became an endless ping pong game. Tom still needed feeds every couple of hours because his stomach could only tolerate very small volumes, so the tube needed to stay in permanently. He disagreed.
So he pulled. I re-inserted the thing (see below). He pulled. I re-inserted. Often five or six times a day.
Inserting an NG tube is simple but not pleasant. Essentially, you gently push the tube up the nostril, round and down into the throat and eventually into the stomach (via a rather unscientific measuring method involving holding the tube from nose to tummy before you start). That triggers the gag reflex. For an adult, it’s fairly easy to explain that swallowing will help, but babies are trickier to reason with.
Early on, I found only one way to successfully insert an NG tube. I swaddled Tom in a towel (blankets were too flexible) on the floor, and would sit astride him to insert the tube. As little and weak as he was, he could flail like the best of them in these moments and would resist with all his might. It was critical to have all the supplies to hand: water, syringe, litmus paper (to test for stomach acid), sticky tape for his cheek. While I became quite the expert, the whole procedure was usually about 20 minutes of endless screaming and resulted in an exhausted baby and mum. Big sister Kez was always there to soothe her little brother through the ordeal (hello trauma and PTSD, but she was and continues to be my hero).
In the previous months, I had learned a lot about tube feeding. I knew that there were more permanent solutions and procedures that could prevent vomiting, but they scared me. From a different perspective, all Tom’s doctors were convinced that his dependence on tube feeding was very temporary (I never agreed – you only had to spend a day with him to see how very difficult feeding was).
An NG tube is supposed to be temporary – usually a matter of weeks. Tom had his for 8 months.
While temporary, it is actually one of the riskier methods of tube feeding, largely because it’s so easy to insert the tube into the lungs. Liquid in the lungs is (I’m sure you’ll agree) not a good idea. Formula in there – very very bad!
So I began to ask about a gastrostomy, or G tube. This is a surgical opening made to connect the stomach to the outside world via a “stoma” (make a hole from the inside to the outside, hold the layers together with the help of some plastic, and there you have it). A PEG tube, or button stays in situ all the time giving access to the stomach whenever needed.
Our very optimistic doctors were reluctant. I’m not entirely sure why, but I suspect because they expected Tom to start eating, which would have been consistent with his diagnosis of Noonan Syndrome. He did not. I started begging, and Tom’s wonderful cardiologist came to the rescue and got the ball rolling on this procedure.
When placing a G tube, doctors sometimes perform a Nissen fundoplication. This involves wrapping the top of the stomach around itself to stop vomiting. It doesn’t stop retching, and it is usually not reversible.
We decided against the Nissen fundoplication. I felt really uneasy about preventing his body from evacuating if it felt the need to, and Tom’s vomiting was at least not constant.
Tom got his gastrostomy at 16 months, in December 2004. He had a PEG, so a tube dangled from his tummy for a year until the stoma was fully formed, at which point a further procedure swapped it for a button – much tidier and easier to manage!
The feeding regime continued much as it had (as did the vomiting!), but we could finally see our beautiful little boy’s face! No more tape and more importantly, no more red tape rash!
Tom’s gastrostomy stayed in place until last week… 14 years and 8 months.
Simple Tangles 