When Jeremy Jones' Stomach Stopped

When Jeremy Jones’Stomach Stopped Working

A Story for ChildrenWith G-Tubes

Written by Anne E. Reckling, PsyDIllustrated by Tim O’Halloran

When Jeremy Jones’ Stomach Stopped Working: A Story For Children With G-Tubesisintendedforchildrenfrompreschooltomiddleschoolwhoeitherhaveorneedag-tube(i.e.agastrostomytubeforfeeding)orhaveasiblingorfriendwithag-tube.Itisintendedtohelpchildrenwithg-tubesrecognizetheirstrengths,understandmoreabouttheirg-tubesandg-tubesurgery,andaccepttheirg-tubesasanimportantpartoftheirgrowthandcontinuingstrength.Inaddition,humorisusedtocapturethereader’simaginationandhelpkeepasenseof‘lightness’aboutthesubjectwhilestillexplainingthemedicalfacts. Pleasereadthisbookwithyourchildandthenopenthedoorforyourchildtotalkwithyoubyaskingquestions.YoucanstartbyaskingyourchildhowheorshethinksJeremyfeelsandthinks:WhatdoesJeremyworryabout?Whatdoeshefeelgoodabout?Whathappensoncehegetstheg-tube?QuestionsaboutJeremy’sthoughtsandfeelingswillgiveyourchildanopportunitytoexpressthoughtsandfeelingsthatheorshemightnototherwisefeelcomfortablespeakingabout.Ifyourchildisreluctanttotalk,thatisokay.Youcanletyourchildknowthatyouareavailabletotalkanytime.

A Note to Parents and Professionals:

ThisbookwasfundedandproducedincooperationwiththeMitochondrialDiseaseAction Committee. MitoAction is a nonprofit organizationdedicatedtoimprovingthedailyqualityoflifeforpatientsandfamiliesaffectedbyMitochondrialDisease. Supportprojectslikethisbookandlearnmoreaboutmitochondrialdiseasebyvistingusatwww.mitoaction.org

Copyright2006

Mitochondrial Disease Action Committee

2007 - Complied & Published by Virtual GraphicsMarshfield, Massachusetts • [email protected]

When Jeremy Jones’Stomach Stopped Working:

A Story for Children With G-Tubes

Written by Anne E. Reckling, PsyDIllustrated by Tim O’Halloran

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WhenJeremyJones’stomachstoppedworking,Jeremycouldstillseeallthewaydownthestreettothecreekwherehecaughttadpolesinthespring.

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Jeremy’svoicestillrangoutloudandclearsothathismusicteachersaid“Bravo!”whenhesangandhisclassroomteachersaid“Hush,Jeremy!”whenhesangbymistakeduringspellingtests.

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WhenJeremy’sstomachstoppedworking,Jeremy’slegscouldstillpumphisbikepedalsandhisarmscouldclimbtheladdertohistreehouse,butJeremywastootiredtorideandtoohungrytoclimb.

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Jeremy’sstomachstoppedworkingalittlebitatatimesothatnoone, not even his mother and dad, knew at first why Jeremy stopped eating.

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Hismothersaid“Eat,

Jeremy!Youneedfoodfor

energy!”Jeremy’sbodyfelt

hungry,buthecouldonlytake

oneortwobitesbeforehis

stomachfeltfull.

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Jeremytookthreebitesofmashedpotatoes,onebiteofpeasandonebiteofchicken.“Mystomachisgoingtoburst!”criedJeremy.Sometimes,hethrewup.

Hisfathersaid,“Eat,Jeremy!Youcan’tleavethetableuntilyoueatyourdinner!”

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Jeremytrieddifferentkindsoffood.Hetriedsoftfoodandhardfood,crispfoodandsoggyfood,sweetfoodandsaltyfood.Hismothermadehimmilkshakesandhisfatherbroughthimchocolateinshinyfoilwrappers.

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Jeremy’sbrother,Tim,evenmadeJeremyhisfavoritepeanutbutterandmayonnaisesandwiches.Jeremytooktwodeliciousbitesandsadlysaid,“I’mfull!”

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Jeremytrieddifferentwaysofeating.

Heateupsidedown…

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...andsideways.

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Heateinacarandinatreeand...

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....onaswingandinhisroomandatthehouseofhis

bestfriend,Roger.Buthisstomachstillfeltsofullit

hurtaftertwobitesandhisbodystillfelthungry.

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“Whathaveyoubeeneating?”askedDr.Paul.

“I’vetriedeverythingIcan.I’vehadsoftfoodandhardfood,crispfoodandsoggy

food,sweetfoodandsaltyfood.Milkshakes,chocolateinfoilwrappers,andpeanutbutter

andmayonnaisesandwiches.I’veeatenupsidedownandsideways.I’veeateninacar,a

tree,myroom,myfriend’shouse,and,ofcourse,inthekitchen.But,nothinghasworked.

Istillfeelfullaftertwobitesandmystomachhurts,”answeredJeremy.

Jeremy’smotherandfathertookhimtothedoctor. “Ithurtstoeat!Ifeelsofullafteronlyafewbites.Sometimes,Ithrowup,”JeremytoldDr.Paul.

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“Hmmm,”saidDr.Paul.Hisbrowneyescrinkledwithworry.“You’velostweight.Thatisaproblem.Kidsaresupposedtogrowbiggerandstronger.” “Whatcanbedone?”askedJeremy’sparents. “IwantJeremytotakesomemedicinethatwillhelphimstopfeelingfullandstopthrowingup,”saidDr.Paul.

ThedoctorhadJeremystandonthescale.

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Jeremytookthemedicinetwiceaday,buthestillcouldnoteatmorethantwobites. “I’msohungryandtired,”saidJeremysadly.

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Jeremy went back to Dr. Paul’s office. Dr. Paul peered over his glassesandlookedatJeremyandhisparents.“IwillhavetorunsometestsonJeremy’sstomach.Wehavetoknowwhyhecan’teat.”

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“Hey,thosepictureslookcool!CanItakethemhomewithme?”askedJeremy. “Sure!I’llmakesomecopiesforyou,”saidthenurse. WhenJeremygothome,heshowedthepicturestoRogerwhosaidhisintestineslookedlikehispetsnake,Alfred.Jeremy’sbrotherthoughttheylookedlikespaghettiandwantedtotakethemtoschoolforscienceclass.

Jeremy’sdoctordidsometestsonJeremy’sthroat,stomach,andintestines.Inonetestcalledagastricemptyingscan,heatesomeoatmealwithaspecialdyeinside.Itdidn’ttastebadanditdidn’thurt.Thedoctorstookpicturesofhowfasttheoatmeallefthisstomach.Jeremythoughttheoatmealseemedtotakeareallylongtimetoleavehisstomachandenterhisintestines!Inanothertest,hedranksomewhitepastethattastedyuckyandthensatunderaspecialcamerasothedoctorscouldseeJeremy’sstomachandintestines.Jeremydidn’tmindthetastetoomuchbecausethetestdidn’thurtandhegottoseethepictures.

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Dr.Paulsaid,“ThetestsshowthatJeremy’sstomachandintestinesarenotworkingproperly.Therearenomoremedicinesthatcanhelp.” “What’sgoingtohappentome?”askedJeremy.Hiseyes filled up with tears. “Am I alwaysgoingtobehungry?AmIgoingtodie?” “No,youarenotgoingtodieandyouarenotalwaysgoingtobehungry,”saidDr.Paul.“Iknowsomethingthatcanhelp.” “Whatisit?”askedJeremy’sparents. “Jeremyneedsag-tubetohelphimgetthefoodheneedstobestrongandhealthy,”saidDr.Paul.

Whenallthetestsweredone,Jeremyandhisparentsmetwiththedoctor.

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“Ag-tubeisasmalltubethatwillgointoyourstomach.Itlooksalittlebitlikeadrinkingstraw.Theg-tubeishookedtoapumpandabagofspecialliquidfoodcalledformula.Theformulagoesthroughthetubeandintothestomach.Theg-tubeandspecialformulawillhelpyougetthefoodyouneedwithoutfeelingsick,”explainedDr.Paul. “WillJeremystillbeabletoeatfoodwithhismouth?”askedhisparents. “Yes,ifhewantsto,”answeredDr.Paul. “ButwhatifIfeeltoofullorthrowupwhenIeatwithmymouth?”askedJeremy. “Ifyoufeeltoofull,youdon’thavetoeatwithyourmouth.Youwon’thavetoworryanymoreaboutgettingenoughfoodtogrowandplaybecauseyourg-tubewillhelpyougetallthefoodyouneed,”repliedDr.Paul.

“What’sag-tube?”askedJeremy.

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“Willithurtwhenthefoodgoesthroughthetube?”askedJeremy. “No,”saidDr.Paul. “Howdotheyputinthetube?”askedJeremy. “Youwillhaveanoperationatthehospital.TheywillgiveyouspecialmedicinethatmakesyoufallasleepandstayasleepwhileIputintheg-tube,”saidDr.Paul.“Itmight hurt a little when you first wake up, but we will give you medicine to stop it from hurting.Then,inafewdays,itwon’thurtatall.” Jeremyfeltscaredtogotothehospital,buthewantedtohavetheenergytoridehisbikeandcatchtadpolesandplayinhistreehouse.

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Jeremywenttothehospitalwithhismomanddad.Hefeltnervous

andscaredandevenalittleexcited.Themixedupfeelingsmadehisbody

seemjumpyandtinglyinside.

“JeremyJones,”calledanurse.

Jeremyandhisparentswentintoagleamingwhitehospitalroom.

Heputonthehospitalpajamasandlaydowninthebed.Thenursetookhis

temperatureandhisbloodpressure.Then,whilehismomanddadheldhis

hand,thenursecleanedhisotherhandwithawetalcoholwipe.

“Whatareyoudoing?”askedJeremy.

“I’mjustcleaningyourhand.Inasecond,Iwillgiveyouasmall

shot,”saidthenurse.Jeremy’seyesopenedbigwithfear.

“It’sokay.Youwillfeelasmallpinchforaminuteandthenitwill

stophurting,”saidthenurse.“IneedtoputinanIV.”

“What’sanIV?”

“It’satinytubethatgoesintoyourvein.”

“Anothertube!”Jeremysaidwithsurprise.

“Yes,butthistubeonlystaysinwhileyouareinthehospital.It

givesyoumedicinesoyoucanfallasleepandmedicinetotakethepain

awaywhenyouwakeup.”

JeremyclosedhiseyeswhilethenurseputintheIV.Itpincheda

bitandthenstoppedhurting.ThedoctorputinthemedicineandJeremy

quicklyfellasleep.

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“Hey,itlookslikealittlebutton!”exclaimedJeremy. “Insidethebuttonisthetinyg-tube,orstraw,thatgoesintoyourstomach,”explainedDr.Paul. “Howdoesitstayin?”askedJeremy. “Thetubehasatinyballooninsideyourstomachanditkeepsyourtubefromfallingout,”saidDr.Paul.“Now,getsomerestandyouwillfeelbettersoon.”

WhenJeremywokeup,his

bellyhurtalittle.Dr.Paulgavehim

somemedicinetotakethepainaway.

Jeremysawthetubeinhisbelly.

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Jeremy was tired and sleepy for the first two days at the hospital.Onthethirdday,thenursesbroughtinamachineonapole.Themachinehadathintubeandabag.InsidethebagwasthespecialliquidfoodthatwouldmakeJeremystrong.ThenurseattachedthethintubetoJeremy’sbuttong-tube.Itdidnothurtatall!ThemachinemadeasoftwhirringnoiseasitpumpedtheliquidfoodintoJeremy’sstomach.Jeremywasveryhappybecauseitdidnothurtandhisstomachdidnotfeeltoofull.

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WhenJeremywenthomefromthehospital,

hetookthemachineandthepoleandthebag

withhim.Jeremywasfedbythetubeatnight

whilehewasasleep.

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Duringtheday,noonecouldseeJeremy’sg-tubeunless

heshowedittothem,becauseitwashiddenunderhist-shirt.Soon

Jeremystoppedfeelingsotiredandsosick.

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ThetubefoodhelpedJeremygrow.Hegrewstrongandtall.

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“Sometimespeoplewearglassesbecausetheireyesdon’tworkwell

andsometimespeoplehavewheelchairsbecausetheirlegsdon’tworkwell.I

haveag-tubebecausemystomachdoesn’tworkwell,”explainedJeremy.

WhenpeopleaskedJeremy

whyhehadatube,hesaiditwasa

magictubethatmadehimgrow.

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AsJeremygrewtaller,hisbodysometimesneeded

tubefoodduringtheday.Then,Jeremyworeabackpack

thatcarriedthebagofliquidfoodandthepump.

�0

JeremyJoneshadag-tubebuthisvoicestill

rangoutloudandclearduringspellingtestswhen

hesangbymistakeandhecouldstillseealltheway

downtothecreekwherehecaughttadpoles.Andnow

hehadtheenergytoclimbthetallesttreeinhisyard

andridehisbikeasfastasthewind.THEEND.

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Question:WhenIhavemyfeedingtube,canIstillgoswimming?Answer:Yes!Thedoctorwilltellyouhowlongyouhavetowaitaftertheoperationbeforeyoucanswimagain.

Question:DoIhavetowearsomethingtocovermyg-tubewhenIswim?Answer:Somedoctorsrecommendcoveringtheg-tubewithawaterproofbandage.Checkwith your doctor to find out where and when you have to cover your g-tube to swim. Sometimesboysweart-shirtsorsurfshirtsiftheywanttokeeptheirg-tubeprivate.

Question:CanIstillplaysports?Answer:Non-contactsportswillprobablybebest.Check with your doctor to find outwhatsportsyoucanstillplay.Youwillhavetobecarefulnottogethithardinthestomach.Thiswouldhurtandmightcausetheskinaroundyourg-tubetotear.

Question:WhatdoIdoatmealtimesatschool?Answer:Kidsdodifferentthings.Dependingonthereasonfortheg-tube,somekidsareallowedtoeatordrinkasmallamount.Somekidsweartheirpumpduringmealtimesinthecafeteria.Kidsthatcan’teatordrinksometimeshangoutwiththeirfriendsandtalk.Othersgetanextralongrecessorspecialtimetoplayonthecomputersatschool.

Question:IknowJeremyneedshisg-tubebecausehisstomachissoslowdigestingregularfood,butIknowthereareotherreasonskidsneedg-tubes.Whataretheotherreasonskidsneedg-tubes?Answer:Childrenneedg-tubesforlotsofdifferentreasons.Sometimes,likeJeremy,theyhavesomethingcalledgastricdysmotility.Thatiswhenthestomachandtheintestinesaren’tabletopushregularfoodthroughthestomachandintestines.Othertimes,thewayachild’smouthorthroatisshapedkeepsthemfromeatingthroughtheirmouth.Babieswhoareborntooearlyaresometimesnotstrongenoughtosuckonabottleandthentheyhaveg-tubesforawhile.

QUESTIONS&ANSWERS

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Question: DidIdosomethingwrongthatmademehavetohaveag-tube?

Answer: No!Itisnoone’sfaultthatyouhadtohaveag-tube.Youdidn’tdo

anythingwrongandneitherdidyourparents.Itissimplythatapartofyour

bodydoesn’tworkwellenoughtoletyoueatbymouth.Youactuallydid

somethingright!Yougothelp!

Question: Doallg-tubeslookthesame?

Answer: No. Some g-tubes are bigger and some are smaller. Often the first

tubeachildgetsisfairlylargewhencomparedtothesmallbutton.Thelarger

tubeisusuallyadiscwithathintubeabout8incheslongcomingout.Thedisc

lies flat against the stomach and the tube can be taped against the stomach.

Thedoctorsoftenreplacethistubewithasmallmic-keybuttonoranothertype

ofsmallertubeaftertheskinandstomachhavehealed.Thechangingofthe

tubesusuallydoesnotrequireanoperationandchildrenareusuallynotinthe

hospitalovernight.Afteraperiodoftime,tubesorbuttonsneedchanging.This

can often be done by parents at home or during an office visit with a doctor.

Question:HowlongwillIhave

tohaveag-tube?

Answer: Somekidsonlyhave

theirg-tubesforalittlewhile,

othershavethemtheirwhole

life.Itdependsonthereasonfor

theg-tube.Thisisanimportant

questionforyouoryourparents

toaskyourdoctor.

QUESTIONS & ANSWERS

AnneReckling,PsyD

isalicensedpsychologistspe-

cializinginthetreatmentof

childrenandadolescents.She

andherhusbandhavetwo

children;Sam(age10)and

Asher(age5).Asherhas

MitochondrialDiseasewhich

hasresultedinintestinal

dysmotility.Becauseofthe

damagetohisstomachand

intestines,hehasag-tubeand

acecostomytube.Theylivein

Columbus,Ohio.

TimothyO’Halloranisa

GraphicArtistandCartoonistwhose

workincludesgraphicdesign,

children’sbooks,illustrationand

painting.Tim’snieceandnephews

haveMitochondrialDisease.He

livesinDaniaBeach,Florida.

About the Author…

About the Illustrator…