Our G-Tube Experience

I believe wholeheartedly that a G-tube not only ensured my son Eric's survival (now 2 yrs 4 month) but can be attributed to his phenomenal growth and oddly enough, allowed him the best possible lifestyle prior to transplant.

Eric was critically ill and diagnosed with ARPKD at birth. He was on a vent for a week and oxygen for 2 more weeks. Due to poor kidney function, life threatening hypertension and hyperkalemia, (high potassium) and major discomfort, he needed both kidneys removed before the age of 4 months. During these first four months, the G tube made it MUCH more likely that he would receive his LIFE SAVING high blood pressure and potassium meds, as well as the medically necessary amounts of fluid. I was expressing breast milk at this time. We attempted to bottle feed at every meal. Sometimes he took it, sometimes he didn't. We also stimulated his mouth and gums. Of course we wanted Eric to eat "normally" but in our situation, it was most important that he get his nourishment by any means necessary.

During dialysis Eric had awful reflux as well. Sometimes he "choked" or "gagged" more than 12 times in the middle of the night and all day as well. (He also ate NOTHING by mouth even with our daily attempts.) There was talk of putting in a Nissin but our team felt that transplant was around the corner due to Eric's growth and stability so we stuck it out. Again, we all feel his growth and health were in part due to the G tube.

Eric was blessed to receive his transplant at only 13 months of age, because he was tall enough and his weight was about 12 kg. Immediately after transplant he was on at least 7 meds. Many of these were not fun to give orally. We used the tube a bit longer. About a few weeks after transplant, Eric started eating.......A LOT!!! We started with soft foods but it was only a matter of weeks before he was eating like any other child his age.

You would NEVER KNOW that he took nothing by mouth for most of his life prior.

Our only gripe with the G-tube was around transplant time it leaked too much. It was causing a lot of problems. (Nothing dangerous, just extremely annoying.) We were forced to remove it after transplant. I was really nervous but it turned out that Eric THRIVED. I did some research concerning how to make his meds more appetizing and we have had no problems administering them. He also drinks very well so I am pleased that dehydration has not been a problem. Right after transplant we put a PICC line in because Eric needed frequent labs. But it was nice to know that worst case scenario; fluid could be hooked up to the line to re-hydrate.

Again, I know there are other issues involved for other kids and that there are other stresses for families in which the child is old enough to be cognizant of the situation but for our infant (especially because of the
severity of the disease), the G-tube was a necessity. Babies can catch up fast. Eric didn't really eat until about age 14 months and didn't walk until 21 months. But now at 28 months, no one can tell he was ever as ill as he was. His life (for now) is..."normal." In fact, he is "off the charts" for height.