Tuesday, August 18, 2009

Notes from Doctors Appointment

Information that we were able to gather from Dr. Tim Degner, Chief of the Pediatrics Department for Kaiser Permanente, Los Angeles Medical Center.

· Should go to full term at all possible and should deliver naturally. No advantage to delivering c-section.
· We want the baby to be as big as possible.
· Come out when baby wants to naturally on his schedule.
· It is improved success rate with the baby being diagnosed in utero.
· Main advantage of delivering in L.A. is having the entire family in L.A. Medical Center
· The outcome of the baby makes no impact on where he is delivered.
· The baby will be going to children’s hospital for the heart surgery (via ambulance)
· Surgery will be done by a heart surgeon. Will be able to meet them a day prior to the surgery to answer any questions.
· The choice of surgeon depends on the exact diagnosis of who will be performing the surgery. It could be a Kaiser doctor or a Children’s doctor.
· Don’t know the success rate for surgery, because we do not know what surgery he will need.
· Overall success rate for babies with a singular ventricle is 50-75% chance to making it through all the stages and getting to age 5.
· Some of the babies don’t make it through surgery, some don’t make it through an illness, because they are to weak to make it through one of these things.
· The older the child gets the better the odds get. So if the child can get through the first year of life and can stay pretty healthy he could have a 80-90% success rate.
· Can’t tell if it is a more positive prognosis or negative prognosis until baby is born and to see his progress.
· The whole process is staged. Things are not happening like an emergency. Not rushing around and doing things in the middle of the night.
· The baby will be born and then they will do an ultrasound to get a better understanding of his diagnosis.
· The things they do to make the baby safe are very stereotypical of the diagnosis.
· The surgery will most likely not be scheduled on a medical need. It is scheduled on what is open or available.
· The process is much more elective process than an emergency process.
· Could have limited time to hold the baby
· Probably not going to be able to put baby to chest like a normal baby.
· Definitely can pump the breast milk and store it.
· Not sure how the feeding will go until we have a better diagnosis of the baby.
· Cord Blood: Does not have much benefit to baby with congenital heart defect.
· Blood Donation: No real benefit of donation of blood. The newborn babies need special blood.
· We can be in touch with the NICU Social worker to get more questions answered about Housing arrangements. (i.e. McDonalds House)
· The baby will have surgery at CHLA and stay at CVICU (Cardio Vascular Intensive Care Unit) until he is stable. Then he will be transferred back to Kaiser NICU once he no longer needs that care.
· CVICU is just for the immediate post surgery care.
· The reason we go back to Kaiser is they will be doing all of the rest of the medical care on the baby for his life.
· General Timeframe for being transferred to Kaiser is 10 days post-operative.
· Most babies that have open-heart surgery in the newborn period will be able to go home 21 days after surgery.
· Home Care: Babies will have to be given medication by mouth and usually nothing more than that. Occasionally the babies will need some other things depending on his progress.
· 1 on 1 care or Day Care? Day Care depends on facility.
· The care at home will be very similar to that of any baby. With the exception of having a lot more doctor visits. Doctor visit do not need to be in L.A. , can be with any Pediatric Cardiologist. The doctor will be checking oxygen levels and weight gain.
· Feeding Tubes sometimes are placed, but try not to use them. Never send anyone home with a nasal feeding tube. They will really try to get the baby to feed orally. The stomach feeding tube would only be placed in after a month if baby is not doing well.
· Dr. Starnes does all of their HLHS Surgeries.
· In a given year at Kaiser, they could send as few as five, and as many as 10. It is different every year.
· Not a 100% that baby Travis has HLHS, but it looks like it.
· Norwood has about a 10-12% mortality rate.
· If it is a different first stage surgery then the mortality rate could be 3-5%
· Circumcision: Because of the aspirin that the baby is on, they typically discourage getting the procedure done. It can be done though if we push for it. Usually have to pay for it if done past 30 days of life. If baby is doing well than we probably can get it done. If baby is not, then they will talk us out of it. There is no medical benefit to having it done.
· Don’t need to see a pediatric cardiologist until baby is out. Not much for them to do.
· Just need to see OB to check for normal baby growth. Same indexes for normal baby is for baby with defect.
· OB Gyn will be the one who will determine if it is C-Section.
· Elective C-Sections can lead to big mistakes, like misdiagnosis of size, dates can be wrong.
· Less respiratory problems if born naturally.
· C-section is not a stress on babies heart.
· CHECK WITH OB about Herrington Rods
· Cannot sleep or stay at surgical unit at Children’s . Can visit 24/7 for short periods of time. Much more restrictive at CHLA.
· Cannot sleep at bedside, can visit most of the time. Need to step out when doctors are doing rounds.
· Not going to have the same doctor during all of the stages of the surgery. It could be several different surgeons. All will be qualified to do the procedure.
· No heart unit at Kaiser. It is a regular NICU.
· Nursing care will be determined by his needs.
· Can bring music or noises. More of those things can be done when he gets better. Blankets, toys, clothes can be brought when he is closer to discharge. (Less tubes) Early phases not allowed. It will become obvious when the time is right.
· Brain Function won’t be able to be determined for weeks or months.
· Heart transplants aren’t really done anymore. Very few will need to have the need for a heart transplant. Maybe 10%.
· He will need a specific medication at birth to keep ductus arteriosis open.
· Pets our not a big risk.
· Since we our Teachers we should wash hands more and maybe change clothing. Washing hands take care of 99% of the germs.
· Subsequent children have 4% chance of having a heart defect.
· Can do some tests to check chromosomal disorder. Can check gene deletion.
· Should be a normal baby delivery.
· We need to get a tour of CHLA and LA Medical Center.
· Dr. Kallin and Dr. Starnes are the main surgeons.
· Have to hope for the best. Got to take it a step at a time. Can’t script it out how the baby is going to do.
· Once the baby is out we can get a better diagnosis and then figure out what the next step is.

No comments:

Post a Comment