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Saving Kobe

Saving Kobe. What your patients’ parents are thinking Brian Bixler MD. “I’m late”. “No, I’m late”. Denial. Home test x 4 (+) Expired Ovarian tumor New home test (+) Blood (+) Ultrasound. Denial plays a big role. The situation. Parents over 40 3 kids (15,14,10) Busy life

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Saving Kobe

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  1. Saving Kobe What your patients’ parents are thinking Brian Bixler MD

  2. “I’m late”

  3. “No, I’m late”

  4. Denial • Home test x 4 (+) • Expired • Ovarian tumor • New home test (+) • Blood (+) • Ultrasound • Denial plays a big role

  5. The situation • Parents over 40 • 3 kids (15,14,10) • Busy life • Reality show

  6. 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

  7. Statistics • There is a 1 in 30 chance the baby will have a chromosomal abnormality • The baby will have a chromosomal abnormality

  8. The pregnancy • No problems • Pitting edema • My fault • Screening tests • Amnio

  9. Kobe James Bixler

  10. 4 week check • Yellow skin? • Yellow eyes? • Yellow tears

  11. 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!”

  12. Oh thank God What the heck is biliaryatresia

  13. Assume that the I know nothing about medicine Even if I am a healthcare professional

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

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

  16. Neonatal Hepatitis • Idiopathic hepatitis • Hepatitis A • Hepatitis B • EBV • CMV • Enterovirus • Alpha-1-antitrypsin deficiency • Wilson disease • IEM • Cystic Fibrosis • Biliary atresia

  17. Diagnosis • More labs • HIDA scan • Next week • Your baby is yellow

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

  19. Diagnosis • Phone calls • Ped surgeons • Transplant surgeons • BA – Kasai procedure • Liver transplant • Practice makes perfect • Shouldice clinic • Kasai procedure • Go to CHOP

  20. 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

  21. Children’s Hospital of Philadelphia • Called Saturday • Hours • Fellow on call • I’m busy call back later • ER Sunday morning

  22. My baby is sick and I don’t know why. Why won’t anybody help me

  23. Children’s Hospital of Philadelphia • Traffic • Parking • H1N1 • 2 hours • ER 8 hours • “your baby is really yellow”

  24. Help us • 5 days • 3 hospitals • Severe distress • No diagnosis • Admitted by Peds resident • Yellow baby

  25. 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

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

  27. Someone help me

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

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

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

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

  32. The camp • Don’t mess with mamma bear • Studies • labs • Rounds • Thought • Sleep deprivation • Decision making

  33. Diagnosis weekneonatal hepatitis • More labs • Ultrasound • HIDA scan • technician • Liver biopsy • Severe cirrhosis

  34. Biliary atresia • 1 in 15,000 births • Progressive obliteration of bile duct system • Cause unknown • Liver failure • Death • Kasai procedure

  35. The surgeon • Met for 3 min • Surgery plan • Was once a transplant surgeon • Hung crepe • No Q and A time • Experienced Kasai surgeon

  36. Dr. Morio Kasai1922-2008 • Pediatric Surgeon • Fellow at CHOP • Dr. C. Everett Koop • Kasai procedure • A chance • A bridge

  37. Kasai results • Best before 6 weeks • Rule of thirds • 80% liver transplant • Malabsorption • Portal hypertension

  38. Pre-op • Extreme tension • Surgeon (1 min) • Plan • Cholangiogram • Kasai • Staff

  39. I can hear you.I feel like I’m going to be sick.I don’t want to hear about your tequila shots

  40. 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

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

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

  43. Last night • 2.5 weeks • Uncertainity • Surgery • Fear, stress, helplessness • Sleep deprivation • “High K incident”

  44. 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

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

  46. Ascending cholangitis • Iv abx • Fever gone • Go home • 2 days • $18,000 dollars for flight

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

  48. How are we now? • 2nd birthday • No cholangitis • Bili normal • Liver enzymes normal • Thriving • 80 % height and weight

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