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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
�
WhenJeremyJones’stomachstoppedworking,Jeremycouldstillseeallthewaydownthestreettothecreekwherehecaughttadpolesinthespring.
�
Jeremy’svoicestillrangoutloudandclearsothathismusicteachersaid“Bravo!”whenhesangandhisclassroomteachersaid“Hush,Jeremy!”whenhesangbymistakeduringspellingtests.
�
WhenJeremy’sstomachstoppedworking,Jeremy’slegscouldstillpumphisbikepedalsandhisarmscouldclimbtheladdertohistreehouse,butJeremywastootiredtorideandtoohungrytoclimb.
�
Jeremy’sstomachstoppedworkingalittlebitatatimesothatnoone, not even his mother and dad, knew at first why Jeremy stopped eating.
�
Hismothersaid“Eat,
Jeremy!Youneedfoodfor
energy!”Jeremy’sbodyfelt
hungry,buthecouldonlytake
oneortwobitesbeforehis
stomachfeltfull.
�
Jeremytookthreebitesofmashedpotatoes,onebiteofpeasandonebiteofchicken.“Mystomachisgoingtoburst!”criedJeremy.Sometimes,hethrewup.
Hisfathersaid,“Eat,Jeremy!Youcan’tleavethetableuntilyoueatyourdinner!”
�
Jeremytrieddifferentkindsoffood.Hetriedsoftfoodandhardfood,crispfoodandsoggyfood,sweetfoodandsaltyfood.Hismothermadehimmilkshakesandhisfatherbroughthimchocolateinshinyfoilwrappers.
�
Jeremy’sbrother,Tim,evenmadeJeremyhisfavoritepeanutbutterandmayonnaisesandwiches.Jeremytooktwodeliciousbitesandsadlysaid,“I’mfull!”
�
Jeremytrieddifferentwaysofeating.
Heateupsidedown…
�0
...andsideways.
��
Heateinacarandinatreeand...
��
....onaswingandinhisroomandatthehouseofhis
bestfriend,Roger.Buthisstomachstillfeltsofullit
hurtaftertwobitesandhisbodystillfelthungry.
��
“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.
��
“Hmmm,”saidDr.Paul.Hisbrowneyescrinkledwithworry.“You’velostweight.Thatisaproblem.Kidsaresupposedtogrowbiggerandstronger.” “Whatcanbedone?”askedJeremy’sparents. “IwantJeremytotakesomemedicinethatwillhelphimstopfeelingfullandstopthrowingup,”saidDr.Paul.
ThedoctorhadJeremystandonthescale.
��
Jeremytookthemedicinetwiceaday,buthestillcouldnoteatmorethantwobites. “I’msohungryandtired,”saidJeremysadly.
��
Jeremy went back to Dr. Paul’s office. Dr. Paul peered over his glassesandlookedatJeremyandhisparents.“IwillhavetorunsometestsonJeremy’sstomach.Wehavetoknowwhyhecan’teat.”
��
“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.
��
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.
��
“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.
�0
“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.
��
��
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.
��
“Hey,itlookslikealittlebutton!”exclaimedJeremy. “Insidethebuttonisthetinyg-tube,orstraw,thatgoesintoyourstomach,”explainedDr.Paul. “Howdoesitstayin?”askedJeremy. “Thetubehasatinyballooninsideyourstomachanditkeepsyourtubefromfallingout,”saidDr.Paul.“Now,getsomerestandyouwillfeelbettersoon.”
WhenJeremywokeup,his
bellyhurtalittle.Dr.Paulgavehim
somemedicinetotakethepainaway.
Jeremysawthetubeinhisbelly.
��
Jeremy was tired and sleepy for the first two days at the hospital.Onthethirdday,thenursesbroughtinamachineonapole.Themachinehadathintubeandabag.InsidethebagwasthespecialliquidfoodthatwouldmakeJeremystrong.ThenurseattachedthethintubetoJeremy’sbuttong-tube.Itdidnothurtatall!ThemachinemadeasoftwhirringnoiseasitpumpedtheliquidfoodintoJeremy’sstomach.Jeremywasveryhappybecauseitdidnothurtandhisstomachdidnotfeeltoofull.
��
WhenJeremywenthomefromthehospital,
hetookthemachineandthepoleandthebag
withhim.Jeremywasfedbythetubeatnight
whilehewasasleep.
��
Duringtheday,noonecouldseeJeremy’sg-tubeunless
heshowedittothem,becauseitwashiddenunderhist-shirt.Soon
Jeremystoppedfeelingsotiredandsosick.
��
ThetubefoodhelpedJeremygrow.Hegrewstrongandtall.
��
“Sometimespeoplewearglassesbecausetheireyesdon’tworkwell
andsometimespeoplehavewheelchairsbecausetheirlegsdon’tworkwell.I
haveag-tubebecausemystomachdoesn’tworkwell,”explainedJeremy.
WhenpeopleaskedJeremy
whyhehadatube,hesaiditwasa
magictubethatmadehimgrow.
��
AsJeremygrewtaller,hisbodysometimesneeded
tubefoodduringtheday.Then,Jeremyworeabackpack
thatcarriedthebagofliquidfoodandthepump.
�0
JeremyJoneshadag-tubebuthisvoicestill
rangoutloudandclearduringspellingtestswhen
hesangbymistakeandhecouldstillseealltheway
downtothecreekwherehecaughttadpoles.Andnow
hehadtheenergytoclimbthetallesttreeinhisyard
andridehisbikeasfastasthewind.THEEND.
��
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
��
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…
