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Posts Tagged ‘g-tube’

I’ve always been a cat lover. It started long ago when my four-year old self woke to find the family cat having kittens– in my bed, under my covers! A series of family pets including dogs, cats and horses followed; the cats were always my favorite for their silent and fluffy unconditional love to an often lonely little girl.

In college, my beloved Tasha chose me as hers by climbing up my pant leg and forcing her kittenly affections on my cheek.  We had seventeen years together including several moves and many relationships. Tasha used to run and hide from all my boyfriends until my husband came along. I’m convinced she was waiting for the “right one” to come along before she finally succumbed to old age and kidney failure in my arms in the middle of the night mere weeks before my wedding.

Shortly after the wedding, my heart still ached with the loss of my Tasha and I wanted to find another cat to love. I was so sure it would be a boy because, well, no other female cat could possibly replace Tasha in my affections. Turns out I was both wrong and right and ended up with not one cat but two — a boy, Rascal, and a girl, Pandora.

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Pandora was a feral rescue cat we adopted when she was about four months old. She was, and still is, an incredibly affectionate girl who loved nothing more than snuggling on my lap. When I was pregnant with Nik, she would lie on top of my belly and rest her head against my heart. I was on bed rest during my first trimester, so there was lots of bonding time between Pandora and me.  In hindsight, I think she was bonding with the baby growing in my belly, too. Though, in typical cat fashion, I suspect she was telegraphing messages of “I rule the castle and don’t you forget it, peanut!”

Nik was born three months early. The devastation of coming home from the hospital without my baby, the worry and waiting for the other shoe to drop because he was so fragile and his health so precarious, was made bearable by Pandora’s faithful and patient love. As I sat on the sofa, night after night, sobbing uncontrollably, she would silently nudge her head into my before wiggling her way onto my lap. It didn’t take long before she would drape herself over my shoulder –offering herself up as a giant furry tissue to catch the torrents of my grief.

When Nik came home from the hospital, seven months later, Pandora immediately bonded with him. Nonetheless, I had to constantly monitor her; being a slightly anxious kitty, she had a habit of indiscriminately chewing through things. Like the lamp cord she chewed through on one of the many days I spent at the hospital with Nik. I was worried she would try to bite through the oxygen tubing which trailed around the house, keeping Nik breathing freely. To my wonder, she never tried; it’s as if she knew that Nik needed her to watch over him.

When Nik napped, Pandora would circle a few times and lie down facing him. When he was awake, despite his inability to do more than sit in his bouncy chair or lay on a blanket, she would sit across the room watching warily. She kept her daily vigil faithfully and slept outside his room each night.

Shortly after we moved back east, when Nik was about fifteen months old and no longer on oxygen, the routine was pretty much the same. No matter where in the house Nik was, Pandora was almost always somewhere she could keep watch over him. Nik wasn’t yet sitting or even rolling over so she stayed relatively close.  Because she wasn’t allowed to sleep in our room (Niksdad has allergies) and she wasn’t allowed in Nik’s room for fear she would get into the crib with him, Pandora continued to keep her silent vigil outside Nik’s bedroom door each night.  When we went into Nik’s room to start the pump for his overnight feeds, Pandora would accompany me into the room and rub against my ankles until I picked her up. “See, girl, our baby is fine. He’s sleeping. Go lie down now.” And off she would go to wait in the hall.

I always thought she would have made an excellent mama cat.

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The sounds of frantic meows at my bedroom door woke me from my already light sleep. “Pandora,” I moaned, “shut up! You’ll wake the baby!” I hissed and threw a shoe at the door in an attempt to scare her away. To no avail. Her meows became louder and more insistent. I got out of bed and threw the door open to shoo her away. She swatted at my leg and head butted my ankle and continued to howl. Something wasn’t right, but I couldn’t figure it out.

I picked her up to soothe her but she jumped out of my arms and darted to Nik’s door, pawing and meowing. Annoyed now, I scooped her up and shushed her. “Fine, you want to see the baby? He’s sleeping. He’s fine.”

When I opened the door, my heart stopped. I remember suddenly screaming as if the house were on fire.

Nik had not ever been able to roll over independently; it was an emerging skill we were working on and he could only roll in one direction. In his sleep, he must have rolled numerous times: the feeding tube was wound completely around his neck. The increasing tension on the tubing had pulled the pump stand over so far that it lay precariously perched on the very corner of the crib. One more turn or a slight bump would have sent it falling to the floor, tightening the tubing around Nik’s neck. Nik was asleep through all of this; he didn’t make a sound.  I wouldn’t have heard anything through the baby monitor which sat next to my pillow. Were it not for Pandora’s utterly uncharacteristic howling in the middle of the night, we would have never known there was anything wrong until it was too late.

Guardian angels come in many incarnations.  Nik’s has the softest fur and the sweetest meow.

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Editor’s note:
Obviously, that was the end of Nik’s unattended nighttime feedings, but Pandora continues to keep her vigil to this day. During the years in which Nik woke screaming in pain every night, Pandora was always right there at my feet, waiting until all was calm and I would hold her over the crib to stroke her gently and show her that our baby was okay. Even now, she waits outside his bedroom door until he has gone to sleep.

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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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I’ve got a head full of thoughts to share —many about communication, the challenges and intricacies of using AAC devices, and some thoughts and questions about the interplay of vision and attention span.  They’ll have to stay there a while longer, I’m afraid.

My days have been filled with playing “guard the (feeding) tube” and “mop up after me!”  Seriously.  Nik has taken to pulling his tube out more than half a dozen times in any given day (today is a new high, I think) and is making his distaste for pull-ups —even when dry— inordinately clear.

It has gone from startling to amusing to downright annoying as hell.  Where once Nik would either pull his tube or strip and go to the bathroom on the floor, now we are hit with a constant double-whammy.  It has become a game to Nik.  He cannot be left unattended right now.

Niksdad and I have decided to take it in stride and not make a big to-do over the behavior.  We know Nik is trying to communicate that he wishes to be rid of both the pull-ups and the tube.  We also know that several things have to happen in order for that to come to pass sooner rather than later.  We’re working on those things daily.  However, Nik, in his infinite smarty-pantsness, has decided we’re not taking him seriously enough and has escalated his campaign. 

Yesterday, as I stood in the kitchen preparing dinner for my perpetually hungry son, I heard a distinct thwackof snapping elastic.  Concerned, as there should be no items in his play area which make such a sound, I looked over the gate to make sure Nik was okay.  There stood my indignant child, in all his au naturel glory, very deliberately ripping the elastic tabs on the dry pull-up he had just removed.  I had to chuckle at his determination; he’s figured out that we cannot reuse the pull-up if it won’t stay on his bottom.    As I looked, I could also see that Nik had removed his feeding tube —yet again.

I sighed and turned to get the necessary supplies to restore order to his clothing and his tummy.  As I returned to the family room, I found this tableau.  There was no hint of randomness to it in the least.

"Dear Mama & Papa, I'm D-O-N-E! Got it?"

"Dear Mama & Papa, I'm D-O-N-E! Got it?"

Dear son,

Your message has been received loud and clear.  Believe me, we want to be done with this nonsense of the feeding tube and the pull-ups once and for all as well.  Alas, it is not yet time and we must continue to dress you and re-insert the dreaded tube for a while longer.

Meanwhile, please give us a break? ‘K, thanks.

Love,
Mama and Papa

**********************************
ETA:   Nik decided we really hadn’t gotten the message clearly; today he pulled the tube and hid it under the sofa. 

Pray for us.

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Today was a perfect storm sort of day.  We would either have a day full of frights and horrors from beginning to end or we would have a day of unparalleled delights and successes. 

We recently had one of the former—a day in which Nik pushed the limits to breaking.  He figured out how to open the lock on the laundry door (using careful analytical skills and brute five-year-old force), purposely defecated on the family room floor (making nary a mess anywhere except in a very neat little spot), and pulled his feeding tube out multiple times in the span of just a couple of hours.

The last time he pulled the tube, he chewed on the silicone balloon until it burst into small bits—which could have choked him —and which rendered the tube unusable.  Did I mention we’ve gone through six tubes in as many weeks?  Yes, we’ve run through what should have been a six month supply already.  (Hey, we don’t do things in half-measure around here!)

A perfect storm was definitely brewing. 

Thankfully, today was the antithesis to that other day.  Nik woke —dry and still dressed in his big boy pants.  He refuses to wear a diaper or pull-up overnight and we decided it wasn’t a battle worth fighting.  He’s happy and we do a bit more laundry than we’d like some days, but so what?

My super trooper woke up hungry as a bear.  Seriously, the first thing he did when he popped up into a sitting position in his crib in the early morning hours?  Signed eat banana.  I kid you not.  So we trundled downstairs in our jammies and proceeded to eat Cheerios and bananas and —for the first time ever— a juicy, fresh peach.  Really, the peach was for me but he wanted to try it.  I never got it back.

Our schedule was jam-packed for the day: PT followed by a developmental play group then lunch and the long drive to the hospital to see both the ENT and the GI doctors to figure out what to do with his ears and his feeding tube.  If all went well with the ENT, there were plans to squeeze in a hearing test, too.  The piece de resistance: the drive home in rush hour traffic with time to spare for dinner and bed.

So many opportunities for disappointment, frustration or meltdowns of epic proportions for my little guy.  It felt like we were walking through an old mine field without any clue as to where the next booby trap might lay.

Nik sailed through an awesome PT session and a delightful play group where he did things he’s never done before— or things he once screamed and resisted doing— with an ease and a confidence that made everyone remark on how far he’s come and how much he’s developing.  It was, I confess, a morning which made me burst with pride.  More importantly, it was a morning which made Nik squeal with glee and sing with unfettered joy.

The trip to the hospital took longer than we thought so we weren’t quite prepared with enough food to stoke our little eating machine; he did have one hunger-induced meltdown late in the day as we waited for the cafeteria to open so we could get dinner before driving home in rush hour traffic.  Once Nik realized he was going to get to eat, he calmed pretty quickly —and ate like the rapidly growing boy that he is.

Our visit to the GI was really just to have her check the measurements of Nik’s stoma site to make sure we have the right size tube.  We’re going to try a different product and see if it doesn’t hold up to Nik’s abuse a bit better.  The new device has to be ordered so we’re stuck with the dreaded Mic-Key button for a bit longer.  Meanwhile though, they gave us a backup tube to take home —just in case!

It was sheer delight to be able to see the look on the doctor’s face when we told her Nik hasn’t had any formula since the end of April.  Her jaw dropped and then her whole face split into a grin.  “That is fantastic news! You’e worked so hard for this you must be so pleased!” she said in her typical understated fashion.

Then it was our turn for a collective jaw-drop.  After taking Nik’s height and weight, the nurse informed us that Nik’s grown just over half an inch  in the past six weeks.  (I’ll wait while that sinks in…)  That certainly explains why he’s got an insatiable appetite and why he’s not gained any weight.  I know he’ll be built like Niksdad —tall and lean— but I was sort of hoping he might wait a few more years  before he tries to catch up to him!

Our visit with the ENT went better than we expected.  Okay, other than the part where the audiology department forgot to check us in and we waited too long for a hearing test.  The bottom line is that Nik’s hearing is in the normal range, there’s no sign of infection or other cause for alarm and the ENT is going to investigate the mysterious mastoid fluid build up.  He wants to see Nik in three months and may order a CT scan then.  He also asked us to send him copies of the MRI’s so he can review them as a series.

Basically, as long as Nik’s hearing is okay and there’s no sign of infection, the approach is to wait and watch.  The alternative would be a mastoidectomy which none of us is prepared for.  We are, however, probably looking at a new set of myringotomy tubes this winter; this will make Nik’s third set. *sigh*

By the time we finished with the back and forth of seeing the ENT then getting the hearing test and seeing the ENT again to discuss the results, Nik was pretty tired.  But not too tired to eat his way through the hospital cafeteria once it opened for dinner at 5:00 p.m.

In addition to his old standby, peanut butter sandwich, Nik scarfed down a banana, some cantaloupe, some pineapple and several bites of my baby lima beans.  My God, the boy can put it away!

By all rights, Nik was fully entitled to a cranky ride home and a fussy time before bed.  Nope.  He sang and chattered and played with his LeapPad book and then willingly put on his pajamas and let us brush his teeth.  He was asleep before we even closed the door to his room.

Serendipity?  Perfect Storm?  Whatever it is, I’ll take a few more like this, please!

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A taste of life at our house during a three hour period leading up to and including dinner and bed time as told through actual postings from my Twitter account.  (Thanks, TC, for helping me see the humor!)

Dear son: pulling your tube *out* is supposed to hurt. Putting it back *in* isn’t. You’re doing it backwards. Love, Mama

 

p.s. to my son: Next time you pull out your tube, please let me know sooner? That hole closes *awfully* fast, lovie. K? Thx, Mama xoxo

 

Dear son: “Third time’s the charm” doesn’t apply to pulling your feeding tube out.

 

Dear son: STOP WITH THE DAMN TUBE ALREADY. Love, Mama & Papa

And the tweet I didn’t have a chance to send:

Dear son: Thanks for passing out cold in my arms at 7:15 tonight.  The feel of your snuggly little body nestled against me —your forehead against my lips — makes me forget all the rest.  Love, Mama

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