Saving Kobe

Im late

No, Im late

DenialHome test x 4 (+)ExpiredOvarian tumorNew home test (+)Blood (+)Ultrasound Denial plays a big role

The situationParents over 403 kids (15,14,10)Busy life

Reality show

ThoughtsHow could this happenFinding time for a babyWhy is everything my faultMothers healthBabys healthChromosomalDowns syndrome

StatisticsThere is a 1 in 30 chance the baby will have a chromosomal abnormalityThe baby will have a chromosomal abnormality

The pregnancyNo problemsPitting edemaMy faultScreening testsAmnio

Kobe James Bixler

4 week check Yellow skin?Yellow eyes?Yellow tears

We have a problemLabsTotal bili 9.5Direct bili 5.4UltrasoundLiver normalSpleen normalGB functioningHe doesnt have biliary atresia!

Oh thank GodWhat the heck is biliary atresia

Assume that the I know nothing about medicineEven if I am a healthcare professional

Diagnosis Hopkins (CHOP)Traffic Finding buildingParkingFinding clinicWaiting room

Please understand that I am stressed outI might do or say things that I would never otherwise do or say

Neonatal HepatitisIdiopathic hepatitisHepatitis AHepatitis BEBVCMVEnterovirus Alpha-1-antitrypsin deficiencyWilson diseaseIEMCystic FibrosisBiliary atresia

Diagnosis More labsHIDA scanNext weekYour baby is yellow

If there is any chance that something is wrong, please find out ASAP

Diagnosis Phone callsPed surgeonsTransplant surgeonsBA Kasai procedureLiver transplantPractice makes perfectShouldice clinicKasai procedure Go to CHOP

I want the best for my baby. Please send me to the doctor where you would take your baby.Try not to let outside forces influence your decision

Childrens Hospital of PhiladelphiaCalled SaturdayHours Fellow on callIm busy call back laterER Sunday morning

My baby is sick and I dont know why. Why wont anybody help me

Childrens Hospital of PhiladelphiaTrafficParkingH1N12 hoursER 8 hoursyour baby is really yellow

Help us5 days3 hospitalsSevere distressNo diagnosisAdmitted by Peds residentYellow baby

What can you possibly be doing that is so important that you cant at least pick up the phone and let me know you care

Do what ever you can to let the family know that they are being cared for

Someone help me

I really dig Hannibal. He had real guts. He rode elephants into Cartilage

I guess Im going to fade into Bolivia

Everybody has a plan until they get hit in the mouth

If it important enough to test, itis important enough to let me know the resultsNOW

The campDont mess with mamma bearStudieslabsRoundsThoughtSleep deprivationDecision making

Diagnosis weekneonatal hepatitisMore labsUltrasound HIDA scantechnicianLiver biopsySevere cirrhosis

Biliary atresia1 in 15,000 birthsProgressive obliteration of bile duct systemCause unknownLiver failure Death Kasai procedure

The surgeonMet for 3 minSurgery planWas once a transplant surgeonHung crepeNo Q and A timeExperienced Kasai surgeon

Dr. Morio Kasai1922-2008

Pediatric SurgeonFellow at CHOPDr. C. Everett KoopKasai procedureA chanceA bridge

Kasai results

Best before 6 weeksRule of thirds80% liver transplantMalabsorptionPortal hypertension

Pre-opExtreme tensionSurgeon (1 min)PlanCholangiogramKasai Staff

I can hear you.I feel like Im going to be sick.I dont want to hear about your tequila shots

Surgical waiting roomNo word after cholangiogram3 hours doing kasai8 hoursIts doneLiver was a rockWe will seeGone in a flash

This is the most important day of our life.Please let me know how surgery is going.

Base campIliusCried for daysMom would not leaveStress!!!!!!Eyes clearedLiver labs improvedGoing home

Last night2.5 weeksUncertainitySurgeryFear, stress, helplessnessSleep deprivationHigh K incident

This has been very hard for me.Please use common sense and respect me just as I respect you.

I am still a momma bear

DecemberFeverTemp 102ScreamingLethargyAscending cholangitis

Ascending cholangitisIv abxFever goneGo home2 days$18,000 dollars for flight

Bounced backFever returnedLiver enzymes highAscending cholangitisER same storyFellow at deskUltrasoundPICC line

How are we now?2nd birthdayNo cholangitisBili normalLiver enzymes normalThriving 80 % height and weight

Biliary atresiaNever goes awayIntrahapatic?Kasai is temporaryCholangitisLiverPortal hypertensionEsophageal variciesFailureTransplant

Domestic Violence Syndrome

SummaryNo one is perfectTry as hard as you can to be perfectHaving a sick kid is no funLife is never the sameAsk these parent questions yourself

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