saving kobe. “i’m late” “no, i’m late” denial home test x 4 (+) – expired – ovarian...

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Saving Kobe

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Page 1: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Saving Kobe

Page 2: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

“I’m late”

Page 3: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

“No, I’m late”

Page 4: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Denial

• Home test x 4 (+)– Expired– Ovarian tumor

• New home test (+)• Blood (+)• Ultrasound

• Denial plays a big role

Page 5: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

The situation

• Parents over 40• 3 kids (15,14,10)• Busy life

• Reality show

Page 6: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Thoughts

• How could this happen• Finding time for a baby• Why is everything my

fault• Mother’s health• Baby’s health– Chromosomal– Down’s syndrome

Page 7: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Statistics

• There is a 1 in 30 chance the baby will have a chromosomal abnormality

• The baby will have a chromosomal abnormality

Page 8: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

The pregnancy

• No problems• Pitting edema– My fault

• Screening tests• Amnio

Page 9: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Kobe James Bixler

Page 10: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big
Page 11: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big
Page 12: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

4 week check

• Yellow skin?• Yellow eyes?• Yellow tears

Page 13: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

We have a problem

• Labs– Total bili 9.5– Direct bili 5.4

• Ultrasound– Liver normal– Spleen normal– GB functioning

• “He doesn’t have biliary atresia!”

Page 14: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Oh thank God

What the heck is biliary atresia

Page 15: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Assume that the I know nothing about medicine

Even if I am a healthcare professional

Page 16: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Diagnosis

• Hopkins (CHOP)• Traffic • Finding building• Parking• Finding clinic• Waiting room

Page 17: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Please understand that I am stressed out

I might do or say things that I would never otherwise do or say

Page 18: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Neonatal Hepatitis

• Idiopathic hepatitis• Hepatitis A• Hepatitis B• EBV• CMV• Enterovirus

• Alpha-1-antitrypsin deficiency

• Wilson disease• IEM• Cystic Fibrosis• Biliary atresia

Page 19: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Diagnosis

• More labs• HIDA scan• Next week• Your baby is yellow

Page 20: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

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

out ASAP

Page 21: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Diagnosis

• Phone calls– Ped surgeons– Transplant surgeons

• BA – Kasai procedure• Liver transplant• Practice makes perfect– Shouldice clinic– Kasai procedure

• Go to CHOP

Page 22: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

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

Page 23: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Children’s Hospital of Philadelphia

• Called Saturday• Hours • Fellow on call– I’m busy call back later

• ER Sunday morning

Page 24: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

My baby is sick and I don’t know why.

Why won’t anybody help me

Page 25: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Children’s Hospital of Philadelphia

• Traffic• Parking• H1N1• 2 hours• ER 8 hours• “your baby is really

yellow”

Page 26: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Help us

• 5 days• 3 hospitals• Severe distress• No diagnosis• Admitted by Peds

resident• Yellow baby

Page 27: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

What can you possibly be doing that is so important that you

can’t at least pick up the phone and let me know you care

Page 28: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

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

cared for

Page 29: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Someone help me

Page 30: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

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

Cartilage”

Page 31: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

“I guess I’m going to fade into Bolivia”

Page 32: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

“Everybody has a plan until they get hit in the mouth”

Page 33: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

If it important enough to test, itis important enough to let me

know the results

NOW

Page 34: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

The camp

• Don’t mess with mamma bear

• Studies– labs

• Rounds• Thought• Sleep deprivation• Decision making

Page 35: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Diagnosis weekneonatal hepatitis

• More labs• Ultrasound • HIDA scan– technician

• Liver biopsy– Severe cirrhosis

Page 36: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Biliary atresia

• 1 in 15,000 births• Progressive obliteration

of bile duct system• Cause unknown• Liver failure • Death • Kasai procedure

Page 37: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

The surgeon

• Met for 3 min• Surgery plan• Was once a transplant

surgeon• Hung crepe• No Q and A time• Experienced Kasai

surgeon

Page 38: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Dr. Morio Kasai1922-2008

• Pediatric Surgeon• Fellow at CHOP• Dr. C. Everett Koop• Kasai procedure• A chance• A bridge

Page 39: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Kasai results

• Best before 6 weeks• Rule of thirds• 80% liver transplant• Malabsorption• Portal hypertension

Page 40: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Pre-op

• Extreme tension• Surgeon (1 min)• Plan• Cholangiogram• Kasai • Staff

Page 41: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

I can hear you.I feel like I’m going to be sick.

I don’t want to hear about your tequila shots

Page 42: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Surgical waiting room

• No word after cholangiogram

• 3 hours – doing kasai• 8 hours– Its done– Liver was a rock– We will see– Gone in a flash

Page 43: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

This is the most important day of our life.

Please let me know how surgery is going.

Page 44: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Base camp

• Ilius• Cried for days• Mom would not leave• Stress!!!!!!• Eyes cleared• Liver labs improved• Going home

Page 45: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Last night

• 2.5 weeks• Uncertainity• Surgery• Fear, stress,

helplessness• Sleep deprivation• “High K incident”

Page 46: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

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

Page 47: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

December• Fever• Temp 102• Screaming• Lethargy• Ascending cholangitis

Page 48: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Ascending cholangitis

• Iv abx• Fever gone• Go home• 2 days• $18,000 dollars for

flight

Page 49: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Bounced back

• Fever returned• Liver enzymes high• Ascending cholangitis• ER – same story• Fellow at desk• Ultrasound• PICC line

Page 50: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

How are we now?

• 2nd birthday• No cholangitis• Bili normal• Liver enzymes normal• Thriving • 80 % height and weight

Page 51: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Biliary atresia

• Never goes away• Intrahapatic?• Kasai is temporary• Cholangitis• Liver– Portal hypertension– Esophageal varicies– Failure

• Transplant

Page 52: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Domestic Violence Syndrome

Page 53: Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big

Summary

• No one is perfect• Try as hard as you can

to be perfect• Having a sick kid is no

fun• Life is never the same• Ask these “parent

questions” yourself