Pediatrician to Geneticist and every thing in between.....Part 3

We left off with Ava having her 3rd HIDA Scan Friday morning on December 15.  That afternoon we had an appointment with Dr. Johnson to hear the results.  He had anticipated the first scan to give us the answer of whether or not Ava had Biliary Atresia .

We were so nervous to hear her results.  We were standing in his waiting room with our newborn for about an hour and a half.  Lucky for us, Ava is the sweetest and most patient baby.  We get into the room with Dr. Johnson and his nurse practitioner and we already notice the tension between them.  He doesn't let her finish asking questions or fill her in on why we were there.  It was like watching mom and dad fight passive aggressively.

First night in NICU

Anyway, Dr. Johnson informs everyone in the room he has the results for us and it doesn't look good.  He explains that what ever goes into Ava's liver isn't coming out.  This is why she is jaundice.  He then explains that it is 90% Biliary Atresia and we should go to Miami because they are amazing for liver transplants.  My flippin heart hit the floor.  I think my ears shut off and I almost passed out.  Our newborn little girl was getting a liver transplant??? Jimmy proceeds to ask questions but I can't even hear anything.   It is explained that Ava will need a Kasai Procedure .  There are different ways of having the Kasai Procedure done and the only way to verify Biliary Atresia and which type of Kasai to do is surgery.  He also explains we should do some research and find a good surgeon out in Miami since they are so well known at the for liver transplants.  We leave with some new formula, because we are still battling Ava's weight issues, that is supposed to help Ava not throw up as much and start getting her weight moving in the right direction.

We get home and Jimmy had to go to work.  He's so amazing because I cannot hide my emotions.  I would've been crying all over our studio.  Plus add in postpartum hormones and it was a sh%tstorm.

That evening we get a call from our pediatrician.  This amazing woman throughout this whole process has been finding our specialist's phone numbers and contacting them.  She then calls us with layman's terms on what they are saying.  We explained to her how Dr. Johnson has told us to head to Miami.  Jimmy thought it was a pretty aggressive suggestion.  I can't even think straight without crying.  The pediatrician agrees with Jimmy and suggests we stay in Tampa and contact a surgeon she had just networked with at USF and works at Tampa General Hospital.

This beautiful lady contacted us at 8 pm on a Friday night, called this surgeon about 8:30 pm on a Friday night and we were advised to call his office Monday morning to get in that afternoon. Our pediatrician explains that time is crazy important for Ava.  The success rate for the Kasai Procedure is all in the age of the patients.  If she gets it done after 3 months of age chances are it won't take and then a liver transplant is need.  She also explains even if it does take someday Ava will eventually need a liver transplant. 

She informs us that Dr. Padias will most likely want to admit us to the hospital to run tests and watch Ava's weight.  Surgery cannot be performed if she is underweight because they are too nervous about how she will recover.  We hang up the phone to have a whole weekend of anxiety and denial.

How could this happen?  This can't be right?  She hasn't even had a chance yet.  These are the sentences repeated throughout the weekend.  Trying to explain everything to our families is just a replay of all our unanswered questions.

Monday finally comes and we meet with Dr. Padias the surgeon at Tampa General Hospital with our packed bags in the car.  He is amazing and wonderful!  He looks at Ava and is so calm when speaking to us.  He explains he wants to have Ava admitted because he wants to run more tests to make absolutely sure it could be Biliary Atresia before opening her up.  He tells us, in his opinion, that it does not sound like Biliary Atresia. Since Ava was still under 3 months he was able to get us a room in the NICU.  That was the night of December 17th.  Now this is where all the fun happens...... (again I have linked the fun medical vocab words if interested)