Ninety-nine bottles of beer on the wall,
Ninety-nine bottles of beer;
Take one down and pass it around,
Ninety-nine bottles of beer on the wall!
A mere five and a half months ago, my son decided that eating was a good thing. It only took him five years and three months to get there, but who am I to quibble over timing, right? I should clarify: Nik did eat for a short period of time back in 2006 but it was very short lived and was never more than a small percentage of his daily nutritional intake. He has, since the day he was born, always had a feeding tube of one sort or another.
In March of this year, we began the journey which has led us to where we are today; we have entered completely new, alien —but exciting— territory. Over the last months, we have had to measure every last morsel of food and carefully calculate the meager percentages of Nik’s daily calories by mouth. Over an amazingly short period of time we began to see the balance shift between tube feedings and oral intake. All of a sudden —almost overnight, it seems — Nik was eating pancakes and pretzels, sweet potatoes and cooked carrots, scrambled eggs and fish fillets.
The change was dramatic, to say the least.
By late May, with great excitement, we told our gastroenterologist about Nik’s vigorous interest in food; by that time he was taking nearly everything by mouth with the exception of some of his medications. Hesitantly, we asked when we would know it was time to lose the feeding tube for good. “Oh, Nik has quite a long way to go still, “ she said. “He needs to be drinking at least 1300 mL’s by mouth.” Thirteen hundred? That’s forty ounces. Nik was barely drinking FOUR a day and struggling with his ability to suck from a straw. Sipping from a cup —Nik laps like a kitten from a bowl of milk — wasn’t even on the radar.
It felt like we had been kicked in the gut.
We decided not to push the issue, trusting that Nik would come around in his own time. We went through a stretch of several weeks in which Nik continuously pulled his tube out or the balloon holding the tube in his belly would rupture from his strenuous play at the park each day. We went through thirteen tubes in a short period of time; thirteen tubes is considered to be, roughly, a four to six year supply for most people. We —all three of us— became desperate to speed up the process of losing Nik’s feeding tube once and for all.
We talked to Miss M, our beloved speech therapist —who is so very much more than that phrase imparts— about new goals to foster Nik’s ability to drink from a straw. If we were going to get Nik anywhere near that thirteen hundred mL mark, it would have to be by straw. In June, we began our stringent campaign. Everything was offered to Nik by mouth —even his Prilosec which had been compounded into a ghastly tasting liquid we could put through his feeding tube all those years. Eventually, Nik began to have some success with getting as much into his mouth as he did onto his shirt or the table. We went through sippy cups with valves, sippy cups without valves. So many permutations of sippy cups and bottles and straws that we looked like we were running a daycare center with all the supplies scattered around our kitchen.
Niksdad and I —with the blessing of our pediatrician— had long ago decided that thirteen hundred mL’s was unrealistic for Nik. Even at half that amount on a daily basis, his urine output has been fine, his bowels working fine, he’s well hydrated and he can cry tears. We decided that it was time to push the issue. On one of our emergency visits to the hospital to replace Nik’s tube —because it had failed again and we had run out of spares and the medical supplier couldn’t get any to us for days— we broached the subject with Nik’s GI doctor. Her response was cautious: “I can’t guarantee that Nik will meet all of his nutritional requirements and I don’t think he will meet his hydration needs, but we’ll see.” We began to push the water in earnest. Just a little bit every hour or so. Then a bit more, and a bit more.
Finally, in early July, we found something “just right” — a sport water bottle with a flip up straw and no valve. We figured, the less suction Nik had to fight, the more water he would be able to consume. It was a slow process at first, but —much like the surge in eating back in March— one day it just clicked into place. Nik had days where he would drink twelve ounces through the course of the day. Then fifteen. Then twenty!
We called the GI to declare that we were all ready to get rid of the tube once and for all; we were prepared to take our chances and needed to know what to do when the tube eventually failed again or got pulled out. It was a reasonable assumption that the tube would fail; we had gone through two tubes in one daythat week and Nik had nothing to do with either!
“When the tube fails or if Nik pulls it out, you may put a bandage over the stoma and let it close by itself. As I said, I can’t guarantee that he will meet his nutrition or hydration needs…” That was all we needed; we got the green light! We knew it was just a matter of time before the tube failed or Nik pulled it out, right?
WRONG. It’s as if, in giving her blessing, the doctor put a spell on the tube —a super-duper-indestructibility whammy. We’ve been waiting for three weeks for something to happen to the damned tube. Nothing. Nothing. NOTHING. Nik picks and pulls but leaves it in. He climbs over all sorts of things at the park (and at home) and still that blasted tube remains.
We could remove it but we decided to wait it out at least until the weather cools down a bit and Nik’s less likely to grind dirt into it at the park. Oh, wait, that latter scenario? Never gonna happen! So, we wait.
Meanwhile, here we are; thirty-two days have passed since we began the water campaign and nothing —and I mean nothing— has gone through that tube. The daily successes have been pretty astounding. Especially this past week with Nik being sick; that was the real test of how well hydrated we could keep him without the tube. On three separate days, Nik has consumed a full liter of water in a day. ONE THOUSAND mL’s. His daily average for the past month? Nearly twenty-seven ounces.
We’re this close, I tell ya.