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Monday, August 17, 2009 — 6:30pm: Nik decided he'd had enough

Monday, August 17, 2009 — 6:30pm: Nik decided he'd had enough

 

Gone, baby, gone!

Gone, baby, gone!

 

November 22, 2004 - August 17, 2009  ~  You served him well

November 22, 2004 - August 17, 2009 ~ You served him well

 

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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. 

THIS. CLOSE.

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GPS Constellation

GPS Constellation

I’d like to be able to report that things have miraculously turned around and that Nik is sleeping through the night. Alas, I made a promise to myself not to stretch the truth that far. Sleeping through the night seems to have become a distant memory for Nik and me; each night he drifts off to sleep fairly peacefully and each night he wakes screaming in pain or distress in the early morning hours. Sometimes it happens more than once a night; sometimes he is awake for just a few minutes and others he is awake for hours. The only commonality we can find, so far, is that there seems to be a pain trigger.

We still don’t know if the pain is the result of Nik’s very different intestinal anatomy —the combination of his congenital malrotation and it’s surgical repair —in the sense of the layout altering the functioning of his bowels, or if the functioning of his bowels is being affected by external forces such as diet, stress, infection, disease, etc. The net result is the same: Nik’s bowels have stopped functioning normally and now need assistance to keep moving.

If that were the only issue, I think we could deal with that. However, whatever is at work causes him such discomfort that he now wakes screaming. The pain seems to trigger an adrenaline response —you know, “fight or flight”— which, in turn, actually slows the intestines further. When the body is in that state of arousal, blood flow is diverted to more critical functions than digestion. I can’t prove it but I wonder if Nik’s constant state of “fight” over the past few years has contributed to the development of the paralytic ileus which recently landed him in the hospital.

Which leads me to another pondering: Is there a reason why Nik produces so much adrenaline? Is there an endocrine dysfunction (that is one area that’s never been checked out)? Could allergies be causing this response? No matter what the cause is, Niksdad and I need to find some way to help Nik get it under control. If we don’t, the potential exists that he could do more serious harm to himself when he’s in the midst of these “panic” episodes.

Since we came home from the hospital, Nik’s ability to cope with the slightest of changes has been practically nonexistent. His knee-jerk response to anything frustrating, painful, unexpected, or upsetting is to revert to punching himself in the face as hard as he can or kicking himself in the shins. You’d be amazed at the marks he’s left on himself. I won’t post pictures because that would be disrespectful of Nik. But I can tell you that the bruises and marks are so bad that both my husband and I have serious fears that someone will see us out in public with Nik and call the police because they think we are abusing him.

I have to tell myself that this is a temporary situation. That Nik’s reserves were so badly depleted by the physical toll of his hospitalization and by the energy it took for him to stay present during that entire ordeal. And he really did stay present. I witnessed some serious behavioral regressions during the week in the hospital —not jus the SIB’s but the need to bite and mouth things in ways he hasn’t in a long time, the need for specific toys or a specific video to play over and over. He even reverted to chewing on my watch for comfort and now refuses his chewy tube —until recently his favored chewing item.

Nik got himself so worked up in the hospital that he could not fall asleep unless I was actually lying in bed with him. Once he fell asleep, I would delicately extract myself and try to catch up on emails or simply walk around a bit to stretch my legs. Inevitably, he would wake in the night and get hysterical unless my body was right next to his. That struck me as the most notable behavioral anomaly; since he came home from the hospital at the age of seven months, Nik has never slept anywhere except in his own room in his own crib. The only time he’s ever slept on or with me was when he was still an infant and would fall asleep after a bottle or a tube feeding. That, to me, was a sign of how stressed Nik was.

Since we’ve been home, Nik’s readjusted a bit to his old sleep habits. The first night he needed me to sit with him —one hand on his head, the other on his back since I couldn’t fit in his crib— while he mouthed my watch until he fell asleep. Then, it was just the hand on the head and the watch. Then, the watch alone. The past two nights, he’s been able to go to sleep fairly easily without my presence and without my watch. He’ll take it at first, mouth it once then he gives it back to me.

I know that the more we return to his normal routine the easier his days —and nights, I hope —will become. The transition is just as difficult for us as it is for him. And yet, through all of the behavior regression and the stress, through all the turmoil and disruption to his routine, Nik has continued to make progress in other areas.

While we were in the hospital, Nik learned how to sign “Yes”and understands how to use it. That alone has been a lengthy journey for us. Now, Nik can answer with a sign when I ask “Do you have an owie in your head/tummy/wherever?”It has opened up a whole new realm of communication for us and may be able to help us learn more about what Nik feels and sees and hears —literally. I’ll be curious to see if we can use this new communication skill when we see the eye doctor on Thursday; we may actually be able to get a better sense of his visual acuity.

And eating. I guess his forced regimen of no food intake for the first few days in the hospital really made an imprint on Nik. We had already been cautious about what we let him have prior to going to the hospital; we knew something was brewing and didn’t want to muddy the diagnostic waters at all. The result has been nothing short of amazing.

Nik has begun to tolerate more textures and to feed himself bits of things like goldfish or graham crackers. He’s mastered the art of eating with a fork or spoon almost by osmosis. And he now sits at the dining room table with us and demands exactly what we have on our plates —on his own plate!

Yesterday, for the first time ever, Nik even took a tentative bite out of a soft cookie during snack time at play group! I know this because I felt his teeth brushing against my fingertips as I held the cookie.

I guess you could say that some things are pretty much status quo and others are barreling ahead. Is it any wonder then that I am constantly feeling that the foundation beneath my feet is unsteady? It seems, lately, I’m not quite certain what to expect and the changeability is tiring.

And yet, oddly enough, I remain highly optimistic that there are answers to be found, ground to be regained, and new frontiers to forge.

I just wish I could remember where I put my map.

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For information about Geocaching, click here.

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