Transplant Evaluations

We had a whirlwind of a trip and are currently at the airport waiting for our plane back to AZ.  Our plane was delayed a few hours out of Phoenix, so we arrived in Palo Alto around dinnertime.  Owen was hilarious on the plane.. as we were landing he said.. "My tummy tickles!"  I said mine does too and he put his hand on my stomach and said "I want to feel it!"  Then as we were leaving the rental car garage in San Jose, Carson and I were trying to decide which route to take to Palo Alto.  He wanted to go the 280, I wanted to take the 101.  Owen says "Mom is right!"  To which Daddy replied.."You don't know nothin'!" (jokingly).  Owen says "YES I DO.. I know about airplanes, and monsters, and Superheros!" 

Uncle Rustyn came down from San Fran to see us and also to surprise Owen with the Incredible Hulk toy!  He was so excited he kept saying.. "I just love my Hulk so much!"

We ran to dinner at Max's and Owen was ready to head back to the hotel after about 20 minutes.  When I asked him if he was tired, he replied with.. "it's not even dark yet!  I just want to play with my Hulk!"   And he did.  The Hulk defeated Rhino and Dr Connors until way past bedtime.

We had a restless night sleep and were up bright and early for transplant evaluations at LPCH.  Owen started with an Echo and EKG.  I love how chill he is with his legs crossed and arm behind his head.  He sure loves his Echos!

We quickly headed over to a clinic room, which is where we spent the majority of our long day!  It all started with Psychosocial evaluations with psychiatry team.  We both felt it was a waster of time, but I can see how it would be helpful for some.  They started with.. "Tell us about Owen's journey and your life up to this point.."  That's it. 

Our next appointment was with the post transplant NP to discuss transplant training.  There was a powerpoint presentation about transplant, but nothing we didn't already know.  It was about listing status, blood types, complications, what heart failure is, ect.  We got a packet with pictures from the slideshow, so nothing new.  It was nice to get to know one of the NP's that is part of the post transplant team.  Other than that, nothing that we already didn't know.

We headed outside for a quick lunch and hurried so we could make it for his lab draw in time.  After waiting 30 minutes, the lab tech said she couldn't draw the requested blood volume due to his size.  So we were sent back to the heart center for clinic so we wouldn't be late.  We waited another hour in this room until we saw the heart failure NP, but not one that we know.  I explained Owen to her and she left the room.

The nutritionist came in and she asked what I feed him, I told her and we were done in less than five minutes. Our social worker came in and just updated her info, but she knows us well for the past three years, so not much to update.  Then the cardiologist came back in with the heart failure NP.  Finally.. I was going to do something productive!

Dr Rosenthal is who we have always seen, but he was out today and I knew that coming into this appointment.  There are two heart failure cardiologists that just take on the pre transplant kiddos.  Dr Bernstein is amazing and I thought it was a good idea for him to get to know Owen as well.  He was very thorough in talking about transplant and why surgical options were not a good idea, but nothing we haven't heard before.  I had a few questions about Tricuspid Valve replacement, because that is Owen's main issue.  His function isn't terrible and his pressures would be Fontan acceptable, if his valve worked properly.  He told me pros and cons to surgical intervention at this point, mostly being cons and said that I had very valid questions that he would talk to Dr Hanley about. 

I really wanted to get down to the details about antibodies, IVIG treatments, post transplant care (biopsies), ect.  Instead I got a lot of.. "we have to discuss him at transplant conference and make sure he is a candidate first."  He said the main reasons he would not be a good candidate is if his liver was sick (then we would look at heart/liver transplant), or if he didn't have access for biopsies.  He then proceeded to tell us we needed a CT Scan to view all his access points for caths and we need to make sure his Glenn site, where the superior vena cava meets the pulmonary artery is wide open.  I'm pretty sure they checked that in his last cath, but they like other data as well.  He then proceeded to say he would like a liver ultrasound, he wants Owen seen by a liver doctor and GI team at LPCH. 

He wants all the tests and data prior to presenting him at transplant conference and they make a decision if he is a candidate for transplant.  They want it done at LPCH and they want it in the next couple weeks.  My biggest issue with this is.. we are HERE now!!  Why have us come back in two weeks to get more data, when they knew the data was necessary in order to evaluate for transplant?!  I have mixed feelings about this. 

I know they needed labs for his antibodies, chemical panel, and other transplant labs (HIV, Hepatitis, CMV, ect).  They took vile after vile of blood, poor guy!!  There was way too much blood to draw in one day, so they took what they needed and we will go to the local lab at home and get the rest this week.   The labs we took today for antibodies was the only productive thing we did all day.

We are now at the airport waiting for our flight home.  It's been a LONG day and we are all exhausted.  My questions about surgical options are going to be addressed to Dr Hanley.  All the questions I have about IVIG treatments and antibodies weren't answered and won't be until we get antibody results back.  The questions I have about listing for transplant are not answered as we don't even know if he is a candidate until they get further data.  Data that we have to obtain at LPCH in the next few weeks.  I'm a little overwhelmed.

I am going to call our regular NP and email Dr Rosenthal with a copy to Dr B (whom we saw today) and see if there is anyway we can do the liver ultrasound and CT Scan at PCH and send the data to them.  If they are concerned about the liver, then we will head up to LPCH to see the liver doctor and GI.  It's just so expensive and exhausting to travel back and forth.. thousands of dollars each trip.   Anyway.  I still have a million unanswered questions that will hopefully get answered in the upcoming weeks. 

Owen's echo and ekg were the same, so there is no immediate concern about needing to be listed now, but he will most likely be in the near future. 

It's time to board the plane so I am signing off!  Thanks for prayers and I'll update more tomorrow.  I hope this makes sense.