As a parent, we spend lots of time everyday making decisions that we hope are in the best interests of our children. With a child with complex medical needs, the decisions are more numerous, more weighty, more often life & death. I look at the choices, weigh the benefits and the costs, and often consult with my level-headed pediatrician before making the choice we move forward on.
But it doesn’t make it easier when I am faced with reversing a decision. The final choice, the impetus for the change or holding of the course, all falls upon my shoulder. When the choice is re-thought after a change- even those unforeseen, unpredictable- hindsight is a harsh reviewer. The harsh light of the week is focusing on my son’s success without a GTube.
His original GTube was placed when he was 7 months old. The surgeon performed a Nissen Fundoplication to relieve his severe reflux symptoms & aspiration, then placed the GTube because he had not yet learned to take ANYTHING by mouth. It was a good option- the RIGHT option- to replace the NgTube that his sister would daily removed from his face and pull out of his stomach. He spent over 6 weeks- his first Christmas- inpatient recuperating from a secondary infection he contracted during his first week with his new tube. When he got home, he was easily able to be given his daily calories and nutrition.
8 months later [15mos old] he began experiencing break-through vomiting past his fundo. He still could only tolerate GTube feeding at the low rate of 1- 1.5 ounces an hour but he was beginning to take some of his feeds by bottle, up to 3 ounces at a time, so tube feedings were limited to overnight. Over the next several years, he took more and more food by mouth and overnight feeds were limited to “fill-in” any missed ounces of formula from during the day. He still only tolerated feeding at 2-3 ounces an hour, but typically only needed 6 ounces at most on any night. By the time he turned 4, the GTube was only being used during bouts of significant illness, although he often threw up fluids delivered through his feeding tube as well. By the time he hit 4.5 years old, the feeding tube was still in place but hadn’t been used in a very long time.
Its lack of use, coupled with his regular pain complaints related to its position in his stomach after 4yrs growth, led to a plan to remove it. Although the doctors agreed to a timeline, his pain complaints intensified in mid September, and he regularly pulled at it trying to adjust it to a more comfortable position. When he knocked it out 2 weeks before the doctors’ timeline, I did not replace the tube. By the time the next nurse shift began, the tract had begun healing and tube replacement would not be possible. The doctors accepted the change in timeline and we moved on in the world of oral feeding.
20 months from the time of its removal, my son has gained 10 pounds. He rarely vomits, has grown inches and ingests 1600-1800 calories on most days. But the GI & other doctors are discussing re-placing a GTube in the near future.
The challenges today are:
- 6-8 waking hours EVERY day are spent sitting at the table with food or drink in front of him to meet his caloric needs
- when he eats, he still has difficulty tolerating normal meal volumes – e.g., dinner is often 1-2oz of meat that has been cut into very small pieces
- he is rarely able to drink 6-8 ounces of fluids AND take in food without a “break” between food and drink
- he drinks ONLY high calorie “peanut butter milk” [home-made formula] and has no access to, nor room for, “free water”
- his limited intake may not be hydrating him enough- and this may be affecting his health in many areas (heartrate, fatigue…)
So this week I am talking with doctors about placing ANOTHER GTube in my son. I am admitting defeat, failure of the 2 years of weight gain and growth being the “RIGHT” choice on the path toward wellness for my son. Hindsight is spotlighting another error, made by me.
