

Travelingwithachildwithmedicalcomplexitycanbechallengingbut withextraplanning,afamilyvacationcanbeamemorableandenjoyable experience.Planningavacation(andexperiencingone)canstrengthen familyrelationships.
ThismagazinewascreatedfromtheTravelGuidemadeincooperation betweenBrades'PlaceandCourageousParentsNetwork(moreon theseorganizationsonpage16).Itofferspracticaladviceonchoosinga location,whatandhowtopackthemedicalsuppliesyourchildneeds, tipsfortravelingbycarandairplane,andwhatprecautionstotake shouldyourchildhaveamedicalemergencywhileonvacation.
Vacationingimprovesyourmood,reducesstress,eventemporarilyboostsproductivity. Peoplewhotravelaremoresatisfiedwiththeirphysicalhealthandwell-being.
Vacationingevenincreasescreativity.Dothesebenefitsapplytothosewholivewith seriouspediatricillness?Ofcourse!
Travelingcultivatesgrowthasafamily,makesfamiliesmoreadaptable,andcreates opportunitiestoleanoneachother.Istravelingquitealotofworkforyouandyour child?Absolutely!Wanttotackleitinbitesizepiecesandstartlocal?Awesome,trya staycation.
Readyforthetripdreamsaremadeof?Startnow.Enjoythesetips,leaveplentyoftime toprepare,andhaveanamazingtime.
Togetstarted:
Exploreexpectations.Decidewhatismostimportanttoyouwithtravelingand figureoutwhatyouhopeforwiththistrip
Choseyourmodeoftravelandtripdetails.Toolslikeaprosandconslistwillhelp sortthroughimportantquestionslikewhereyouwanttogoandhowyouwanttoget there.
Preparation.70%ofstressrelatedtoawell-plannedtripoccursinthepreparation phase.Thefollowingpageswillhelpguideyouthroughthepreparation.
Medicalneeds.Medicalproblemsmayarisewhileonvacation,justliketheydoat home,andwithsolidpreparationyoucanmanagethemjustlikeyoudoathome. Packing.Havingtherightitemsandknowingwheretofindthemkeepsthefocuson thefun,thepeople,andthewonderfulmemoriesyou'remakingonthistrip.
Lodging.Whereyoustaywillbecomeyourhomeawayfromhome;choose somewherethatisasaccessibleandaccommodatingaspossible Flexibility.Whiletraveling,beingflexibleiscritical.
Inputandordersfromproviders.Gatheringinputaboutyourtravelplansfromeach activememberofyourchild’smedicalteamisimportant.Tellthemyourplans(timing, location,activitydetails),askanyquestions,andaskfortheirinput Havethem
formalizeandsignanyneededorders,routineandPRNprescriptions,lettersof medicalnecessity,andequipmentneeds.
Anticipatemedicalchallenges.Anticipatewhatsymptomsandproblemsmight worsenduringthetrip,suchasdystoniaworseningwitharoadtripbecauseof increasedtimewithoutpositionchanges.Next,withyourmedicalteam’sinput,create aplantorespondtotheworseningofsymptoms.
Organizemedicalinformation.Whetherasahardcopyordigital,compiledetailed medicalinformationincludingincaseofemergencyinformation,diagnoses, medications,allergies,insurance,currentorders,nutrition,communication,medical teamcontacts,pastsurgeries,hospitalizations,andPOLST/MOLSTforms. Keepingpapersandinformationhandy.Keepyourchild’smedicalinformationeasily availablebyputtingitonyourphone,emailingittoyourself,orstoringitinagoogle drivefolder.Printoutahardcopyandkeepitinyour‘gobag’orfirstaidkit. Besuretohaveseveraldaysextraofmedications,supplies,andtreatments.
Uponarrival,identifythelocationofmedicalfacilitiesifyouhavescheduled treatmentsormedicalcareplannedandcheckwithhost/hotelstaffabouttheclosest children’shospital,urgentcare,etc.incaseitisneeded.
Carefullyconsiderhowyourchild’suniquebodywilltoleratevariousactivities. Lookintowheretoattendtocareinpublic.
Preparationiskeytosuccessfultravelforchildrenwithmedicallycomplexdiagnoses,and somethingthatcanbedonewellinadvance.Travelcanbesafeandfunformostchildrenwith seriousillness.Preparation,realisticexpectations,and inputfrommedicalteammemberscanhelpyourtrip besuccessful.
Airtravelcangetyoutoyourdestinationwithjusta fewhoursin-flight.Withplanning,extratime,and assistancefromTSAandairlinestaffyourfamilycanfly rightthroughtheairtravelexperiencewithyour medicallycomplexchild.
Airlinesaredifferent.Eachairlinehasspecificpoliciesforequipmentand accommodations,presentedintheir‘accessibletravel’policies.Thesepoliciesanswer questionsaboutin-flightoxygenuse,administeringcertainmedicationsduringflight (infusions,enteralfeedings),batteryrequirementsforpowereddevices,andtheuseof safety/mobilityequipmentlikewheelchairsandcarseats Choosetheairlinethat workswithyourchild’sneeds.
Booktheflightbyphone.Lettheairlineexpertshelpyoubycallingthemdirectlyto bookyourtickets.Theycananswerallofyourspecificquestionsaboutflyingwithyour childsuchasifyoursafetyseatwillfitthatplane,arrangingforanairportescort,etc. Theywillalsoensurethatyoucompletetheairline'srequirements,suchasalerting them48hoursinadvancewhenflyingwithoxygenormedicaldevices.
Planesareunique.Olderplanesmayhavenarrowaislesthatprohibitmanual wheelchairuse,orsmallbathroomsthatmakeitverydifficulttochangeanolderchild. Identifytheamenitiesthattheplaneoffers,suchasin-flightpowerforequipmentor seatdimensionsforseatingrequirements.
Timingiseverything.Prioritizeflighttimesthatwillworkwithyourchild’sschedule andneeds.Considerwhattimeofdaywilltheybesthandletheairportchaos,tolerate posturalflightdemands,needacomplexdruginfusion,etc.Wouldyourchildbenefit fromalayoverbreakordobetterwithanonstopflight?
Considerchangeableflightsoradd-onflightinsurance.Giveyourselfpeaceofmind bypayingforflightinsurancesothatunforeseenchangesarehandledwithout additionalexpenses.
Managingasuccessfulflightbeginsbeforeyouevenbuythetickets.Thereareafewthings toconsiderwhenbookingtheflight:Whilecheckingallofyourluggagecanmakeiteasierintheairport,itisessentialthatyou carryoneverythingyoumightneedinthenext24hoursincaseofunplannedtravel emergencies.Allmobilityaids,medicaldevices,andmedications(intheiroriginalbottles) shouldbecarriedonanddonotcounttowardsyourcarry-onlimits.Ifspaceontheplane islimited,youmaybeaskedtogate-checksomeoftheseitems.That’sallright,they’llbe returnedoncetheplanelands.
Asageneralrule,rememberthatifyouwon’tsurvive24hourswithoutit,itdoesn’t belonginyourcheckedbaggage.Keepessentialsuppliesforfeeding,toileting, hygiene,andextraclothinginyourcarry-on.
PackyourcarryonwiththeTSAsecurityscreeninginmind!Packmedicationsina largeziplockbagsotheycanbeeasilyexaminedwithoutbecomingdisorganized.Ifyou haveliquidmedicationsoratube-fedchild,simplymaketheagentaware,andtheywill excludeitfromtheliquidquantityrule.
TSAagentsaretrainedtoaccommodateyourmedically-complexchildandmakesecurity screeningaseasyaspossible.Theycanpersonallyescortyourfamilythrough thesecurityscreeningprocessfromstarttofinishifyouprovidethemwitha72-hour notice.Youcanalsocallthe‘TSACaresLine’ withspecificquestionsandarrangeforyour escortthroughsecurity.Ifyouhavemedicalequipmentormedicationsthatshouldnotbe X-rayed,simplyalerttheTSAagentandtheywilluseanalternatescreeningmethod
Forchildrenwithautismfamiliarizationwiththesecuritycheckpointaheadoftimecan bereallyhelpfulonthedayoftravel.LearnmoreaboutthisthroughtheWingsforAll program.
PrintandcompletetheTSAnotificationcard.Showingthistothecheck-inagentwillhelp ensurethatyoursecurityscreeninggoessmoothly.
Oxygen
Airlinesdon’tallowoxygentanks,butFAAapprovedportableoxygenconcentratorsare permittedandcanbeaniceoptionfortheentiretrip.Contactyouroxygensupplierand seehowtonavigatethis,theymayloanyouonetouseforthetrip Iftheywillnot,there arerentalcompaniesthatyoucancontact.
OtherDevices
VerifythatyourdevicesareFAAapproved(particularlytheirbatteries).Eventhoughthe planemayhaveoutletsforuseduringflights,mostairlinesrequireyouhaveenough batterylifefor150%ofyourin-flighttime.YourDMEprovidercanhelpyougetmore batteriesjustforthetripandansweranyFAAquestionsyouhaveaboutthedevices.
Bathroom
Weallhopenottohavetochangealargerchild’sbriefwhileontheplane,butifyoudo, asktheflightattendanthowtobestnavigatethis Thebackoftheplanemightofferthe mostprivacy,chuxoratravelblanketcanprotectyourchildfromthefloorandplacing trashinaziplockbagwillminimizeresidualodors.
Roadtripsofferanadaptablefamilytravelexperiencewhichis appealingwhentravelingwithachildwithmedicalcomplexities. Flexibleschedule,plentifulpackingspace,comfortableseating,and
theabilitytoaccommodatenecessaryadjustmentsastheyariseare justafewoftheperksthatcartravelcanbringtoyourfamily’strip.
Centeringyourplanningonyourchild’sneeds,tolerances,andlimitsiskeytosuccessful travel
Howmuchtimecantheyspendinthecarbeforetheyneedabreak?Changing positions,deliveringscheduledmedications,andbathroomneedsareallexamplesof reasonstoscheduleplannedbreaks.Mapoutyourrouteaheadoftime,andkeeprest stopsandothercareneedsinmind.
Whatislikelytogowrongwhiledriving,andwhatwillIdoifitdoes?Hopeforthe bestbutplanfortheworst.Thinkingthroughwhatmightgowrongisanimportant stepinplanningahead.Knowingthatyouhaveaplanwillputyourmindatease. Consideryourchild’ssymptoms,andwhatyouwilldoiftheyneedanintervention whileontheroad;forexample,ifyourchildispronetopullingontheirG-tube,plan forwhatyouwilldoiftheypullitoutwhileyouaredriving.Contingencyplanningcan giveyouconfidencethatyouarereadytohandlewhatcomesyourway.
Keeptheitemsyouwillneedtoaccessfrequently(medications,feeding,hygiene, suction)inaspecific,easy-to-reachlocationandcommittoreturningthemtherewhen notinuse.Smallbinsundervanseatsanddoororganizersonthebackofbucketseatsare greatstorageplaces.Considerarrangingbinsorbagsbytask,oneforrespiratorycare, feeding/G-tubecare,hygiene,distractingactivities,etc.Userearortrunkstorageforitems youwon’tneedwhiledriving.
Rear-viewmirrorextensionsgiveyouasafeviewtothebackseats,helpingyoukeepone eyeontheroadandtheotheronwhat’shappeninginthecar.
Addyourownessentialitemstopackagesofwipes,smalltrashbags,varioussizeziplock bags,plasticcups,scissors,andchargingcords.Whenyouneedthemyouwillbehappy thatyouhavethem.
Withmobilityormuscletoneconcerns,addasecondcarseatsafetysystemtoyour everydaycarseatsystem.Alternatingbetweenthemincreasescomfortandcartime tolerance.Ifsafeforyourchild,usinganapprovedEZ-onvestsystemwithabodypillow forpositioningsupportcansignificantlyimprovecomfortinthecar.
Seatbeltbucklecoversareagreattooltobesureseatbeltsdon’tcomeoffwhenthey shouldbeon
Oldphonesortabletsaregreaton-the-roaddeviceswhenpre-loadedwithgamesand videos(Disney+,Netflix).Downloadcontentaheadoftimeviawifisoyourchildwillhave fullaccessevenwithoutanactivephoneordataplan.Don’tforgettheheadphones.
Packingwellisessentialtoagreattrip.Havingtherightitems(and knowingwheretofindthem)helpskeepthefocusonthefun,the people,andtheamazingmemoriesyou’remaking.
Nodoubtyourmedically-complexchildhasmorestuffthanallfamily membersputtogether!Pre-madepackinglistscanhelpmakeyourown uniquelist.Tomakeyourlistthinkthroughyourchild’sroutinesduringa typicaldayandwritedowneachandallofthesuppliesyouuse.Thendothe samebybodysystem(GI,respiratory),andagainbytasks(feeding,suctioning, bathing),addingnewitemstoyourlisteachtime.Checkyourlistagainstyour monthlysupplyorderreceiptandavisualinspectionofyoursuppliesathome.
Howyouorganizeisveryindividual.Isitbettertohaveeachfamilymember managetheirownitemsandsuitcase,ordoyouhaveeveryone’shygiene itemsinonepackedbag,allthePJsinanother,orabitofboth?Packingcubes orlarge,clearziplockbags(2.5gallorevenbigger)helpkeepthingstogether andeasilyfound.Considerbagsthatexpandforextraspaceasyoubuythings onyourtrip.Ifyouaretakingaflight,keepaneyeontheweightofeachbag andredistributeasnecessary
Putessentialitemsforyourchild’scarefor12hoursinaneasilycarriedbag thatstayshandythroughoutyourwholetrip.Expanditforthistriptoinclude aspareortwoofeachtube(G-tube,trach,ostomywafers),yourICEform,a comfortitem,andahigherquantityoftheotheressentialmaterials.Keepthis baghandyatalltimes;itcanbealifesaver.
Thoughtscanraceaboutifyou’verememberedeverything,haveenough,how you’llfititall,howyou’llfindanything,etc.Haveconfidenceinthe comprehensivelistyoumadeandleaveplentyoftimetopack.Ifpackingis stressfulputonsomemusic,startearly,minimizedistractions,maybeeven packsupplieswayaheadoftimetobreakitup.
ItemstoKeepHandy
Handicapplacard,batterypackforphone&tabletcharging,scissors,sharpie,chuxpads (theygiveyouacleansurfaceandcleanupmesses),andwipes.
ItemswithPurpose
Bringanitemthatcomfortsyourchildduringdistressingortiredtimesandbringa favoriteitemthatwillhelpwhenhavingtowait.
MiscellaneousThingsNottoForget
Cordsforphonesandequipment(feedingpump),powerstrips,extensioncords,laundry bags,lotsofziplockbagsfororganizationandwetorsoiledtrash,laundrypods,and insurancecards.
Headphonescanprovideentertainment,solitude,andcontroloverenvironmentalnoise; considerapairforeachfamilymember.Considergivingeachfamilymembertheirown backpacktocarrywater,snacks,andentertainmentdevices.
BoredomBusters
Oldphonesortabletscanbepreloadedwithmovies,games,andpicturesforfunand don’tneedaphoneplanordatatoaccessdownloadeditems(Netflix,Disney+).Consider otherportableactivitiessuchassnacks,readingbooks,etc.
FirstNightTips
Makethefirstnighteasierbypackingeverythingyouallneedforthatfirstnightinone suitcasetoprioritizegettingagoodnight’ssleep!
DocumentsandPapers
Updateyourincaseofemergency(ICE)andyourmedicalinformationanddigitizethis informationsoyoualwayshaveaccessviayourphone Emailittoyourself,makeagoogle drive,oruseanapplikeLightningBug,butbesureyoualsoprintitoutandkeepacopyin yourgo-bag/firstaidkit.
ConsiderShippingItemsAhead
Considershippingitemsaheadtolodginglocationssuchasbriefs,wipes,andenteral feedingsupplies.Ontheboxincludeasupervisor’snameaswellas‘guestsupplies’for arrivalon(date)forthe(name)family.
Yourlodgingisyourhomeawayfromhome.Ahotel,cruiseship, vacationrental,orstayingwithfamilyorfriendscaneachworkwell.
Knowinghowthelocationmeetsyouruniqueneedshelpsprepare youforpotentialchallenges.
Prosandcons.Consideryourchild’suniqueneedswhenplanningwhatlodgingworks bestforyou.Forchildrenwithalotofequipment,wherepackingandunpackingoften wouldbechallenging,considercentrallodging.Forchildrenwithdifficultytravelingin thecar,considerlodgingclosertoyouractivities.Also,thinkthroughyourhome routineandconsiderhowyourroutineswillchangebasedonaccommodation changes.
Accessibility.Beingabletoutilizethewholelodgingfacilityisimportantandadirect callistheeasiestwaytogetthemostaccurateinformationonaccessibility.Explain yoursituationandaskforspecificdetailsaboutroomaccessibility,ifthereare elevatorsnearby,ifthereisafridgeintheroom(medication,food),ifthebathrooms andshowersarewheelchairfriendly,iftherearerampstoaccessthepoolanddining areas,etc.
Stayingwithfamily.Stayingwithfamilycanstrengthenlifelongrelationshipsand makemeaningfulmemorieswithpeopleyoulove.Opencommunicationiskeytobeing agoodhouseguest;taketheleadinaconversationaboutyourchild’sneeds,and listentoyourhost’squestionsandconcerns.
Shippingahead.Sometimesshippingsuppliesaheadsavespreciousspaceand simplifiesthedayoftravel.Callaheadtodiscussthiswithyourhotel,identifya manager’snametoputonthepackage,andconfirmtheaddress.Shipwithatracking codeandonceitarrivescallthehotelandconfirmwherethepackagewillbestoredso thatyoucaneasilyfinditwhenyouarrive
Packextensioncords,powerstrips,personal andmedicaldevicepowercords,andyour child’sfavoriteitemsforcomfortandfun. Bringanythingthathelpsyourchildfeelat home.
Callaheadonthedayofyourarrivaltoshare yourexcitementtostayattheirfacilityandlet themknowofyouruniqueneeds (accessibility,fridge,pre-shippedsupplies, etc.)sothattheyhavetimetoresolveany challengesbeforeyouarrive.Explainyour medicalneedsandaskthemtochangeallthe bedding,includingthemattresscoverand bedspread.Askingforextratowels,pillows, andblanketsmightbehelpfulforpositioning, changingstation,etc.
Takingtimetounpackandsetthingsupwill helpyouknowwheretofindsupplies,identify anymissingitems,andhelpfamilymembers feelathome.
Portablesafetybedrailscanbetemporarily addedtoabedtoprovideforsafety Safety sleeptentsareperfecttoreplaceyour pediatricsafetysleeperathome.Usewedge pillowstohelpwithpositionalneedsfor reflux,aspiration,orrespiration.
Whencallingthehotelaheadoftime introduceyourself,yourchild,andtheir needs;andexplainthatyouarelookingfor informationaboutanupcomingstay.
Askaboutfacilityaccommodationsbasedon yourneeds,suchaswheelchairaccessibilityto rooms,showers,andthepool.Askifthereis anin-roomfridgeformedications,anonsite restaurant,ifanypartsofthehotelarenot accessible,etc.
Askaboutlocalmedicalservices,suchas pharmacies,children’shospitals,and emergencymedicalservices.Thisisespecially importantifthelocationisrural,orataresort thatisremovedfromcityinfrastructure(such asamountainorbeachresort).
Ifyouwouldliketoshipsomesuppliesahead, letthemknowandexplainwhyitwouldbe helpful.Confirmtheshippingaddress,and obtainaspecificmanager’snametoinclude ontheoutsideofyourpackage.
Staycationscanprovidemanyofthebenefitsofdistancetravelandmightbe exactlywhatyourfamilyorchildneeds.
Stayinglocaldoesn’thavetomeanstayingathome.Checkingintoalocal hotelorrentinganAirBnBcanhelpcreatethatvacationambiancewithout thehassleandexpenseoftravelingfarfromhome.Forparentswhofeel uncertainaboutvacationingfarfromhomewiththeirmedicallycomplex child,staycationsofferalessstressfulexperiencethatletsyoupushyour boundarieswithoutoverextendingyourself.
Identifyingyourhopesandexpectationsforthestaycationisthefirststep. Askyourselfwhatwillmakethisexperienceasuccessforyouandyour family?Areyouhopingtorestandrelax,tocreateexcitingnewmemories,or tofeelcloserasafamily?Knowingwhatismostimportanttoyouwillhelp youplanforsuccess,andhelpyourecoverwhenthingsseemtobegoing poorly.Takeamomenttoreflectonthesetopics:
Vacationingismeaningfultomebecause .
Vacationingworriesmebecause .
Forme/mychild/myfamilytravelingwouldhelpus .
Thisstaycationwillbeasuccessifitmakesmefeel .
Ifeelcomfortabletraveling (miles/hours/minutes)from (home/mymedicalteam/ahospital).
Nowthatyouunderstandwhat’simportanttoyou,choosestaycation activitiesthatalignwithyourgoals.
Bringtheexotichomebyhavingethnicallythemedactivitiesandmealseach day(themeslikeHawaiiday,Italyday,Mexicoday,etc.).Enjoytravelvideos anddocumentariesfromotherlands;evenexploringonGoogleEarth togethercanbefun!
Makenewroutinesatthehouse.Sleepin,stayuplate,switchupmealtime, andmakeitfeellikeyou’reonvacation.
Setgroundrules.Exploreyourpriorities(spendtimetogether,makenew memories,relax,etc.)andsetrulestohelpthosehappen.
Putyourselfin“VacationMode”.Takevacationdaysfromwork,answeryour phoneselectively,tryandminimizehousekeeping,andgenerallyactasifyou wereoutoftown.
It’sOKtodoactivitieswithonlysomefamilymembers.Beupfrontaboutit andtakealotofpicturesandvideostosharewhenyougethome.Youcan even“bringalong”thosestillathomewithavideocall.
Thefollowingarehelpfullinksandresourcestohelpmakethe mostofyourtrip..
AnticipatorySymptomManagementForm
LightningBugApp
CPNInCaseofEmergencyForm
ACEPEmergencyInformationFormforChildrenWithSpecialHealthCareNeeds
Luggage/CarseatInCaseOfEmergencyTags
FlightResources
AirlineAccessibilityPolicyDeltaExample
TravelOptions
TSAResources
TSACares:(855)787-2227
ParkandMuseumResources
NationalParkPassAccessPassisfree($10processing)toUScitizenswithdisabilities, andadmits1vehicleincludingupto4adultsandchildrenunder16toallnationalparks.
Playwithmeorinclusiveparks&playgroundsnationwidedirectory.
Museumsforall-providesdiscountsorfreepassestomanynationwidemuseums.
CPNisanonprofitorganizationthatprovidescurateddigitalresourcesandprogramming tohelpcaregiversadvocateforchildrenlivingwithseriousillnessandnavigatetheillness journey AtthecenterofCPNareparentandclinicianvoicesthatilluminatethelived familyexperienceandfocusonpsycho-socialandemotionalneeds,regardlessof diagnosisandwithoutbias.
CPNresourcesincludevideos,podcasts,newsletters,ablog,socialmediaposts, educationalguidesandlearningpathwayswrittenforfamilies,andaclinicianportal offeringmaterialsforuseinself-andcolleagueeducation.Programsincludevirtual events,andvirtualandin-personpresentationstoclinicianaudiences,industryand patientorganizations.CPNalsopartnerswithotherstobringthefamilyperspectiveto clinicalresearchandawiderangeofcommunication(ormedia)outlets.
Brades’Placeisformedinthehonorandbenefitofallchildrenwithcomplexmedical challengesandtheirfamilies.Theorganizationprovidetheneededholisticand comprehensiveservicesandsupporttoallowthewholechild(physical,emotional,and spiritual)andtheirfamilytolivewell.