A Double Lung and Heart Transplant???

So in my previous post I wrote that I was very nervous for our appointment at the cleveland clinic and that I couldn’t put my finger on the exact reason why.  Well, for whatever reason my instinct was right and this appointment was anything but what we were expecting. 

When the doctor came in he talked about Logan’s condition and told us that many of these kids need a heart and lung transplant.  He said they can put it off for a long time but eventually we will most likely be at that point.  I was shocked, scared, and be honest a little skeptical.  I asked the doctor some questions and based on his answer I began to question whether he really even understood Logan’s anatomy.  He did say he was a little confused as to what Dr. Del Nido did during surgery so I set up a phone call with him to speak with Dr. Del Nido personally. 

Never-the-less after our conversation I was still not quite convinced that this doctor fully understood Logan’s condition.  Maybe it was unfair to expect him to pick up so much information in such a short period of time (Logan is, after all, very complicated.)  Immediately, after we got done with this appointment I called Dr. Patel and asked him to tell me this wasn’t true, that my gut was right and that this doctor didn’t understand Logan’s condition at all.  Dr. Patel said he wanted to re-look at the post op report and to make sure he didn’t miss anything before he could give me a definitive answer (he is extremely meticulous, I don’t believe this was really necessary) and when he called back (which was 2 of the longest hours of my life) he said that he did not believe he missed anything and that this is not a condition that would lead to a heart and lung transplant.  Big Sigh………..

Needless to say we feel much more comfortable going back to the doctors at Boston.  I think that although it would have been very conveniant to do this close to home, the learning curve it probably too big to bring new players right now.  After two days of continuous emails we have all the details worked out and we are headed to Boston today at 5pm.  Our plane gets in around 8pm and then they would like us to take Logan immediately to the Emergency Room to be evaluated.  I think that this is an over reaction, I think we would have been fine to take him to the hotel and check him in the morning, but this is not a battle I want to fight.  A doctor that we are very familiar with is going to meet us in the ER and evaluate him. 

Dr.Del Nido also has a surgery scheduled for 7 days out in case the cath doesn’t work.  The goal of the cath is to widen the confluence of pulmonary veins so the adequate blood flow can return from the lungs to the heart easily.  Right now there is some scar tissue that is blocking the flow.  If a balloon doesn’t do the trick then Dr. Del Nido said that he can do a surgical repair with very good results.  We are just going to cross our fingers that this darn cath is going to work.  Once again I will be updating Logan’s Facebook page more frequently than this wordpress site so if you would like to join his facebook page please feel free.  Heterotaxysyndrome-Logan Spyker

11 thoughts on “A Double Lung and Heart Transplant???”

  1. He doesn’t look nearly as blue in these pictures. I think the 74 was probably right!

    Anyway…you will be in my thoughts and prayers. I am still praying you don’t get sent home and that everything goes smooth.

    1. yeah, thats because he only looks blue in pictures if he is up against someone else. I still dont think he is in the 70s though. But according to Boston he is in the 50’s so who knows. Mabye he is really 98! and everyone has been wrong this whole time. (gee, wouldn’t that be nice?)

  2. Wow, how scary. I felt much relief when I came back to my daughter’s home doctors after living out of state for a year.

    Good luck with the coming procedures, our thoughts are with you all.

    Jessica

  3. OMW You have all been through so much.I am so happy that the drs in Boston can give you more options than the transplant.We will be praying that the cath does work for him.Thinking of you.

  4. Scary, this is exactly why I run nearly everything that is done in Arizona through Zoe’s cardio at CHOP. I’m glad you are headed back to Boston.

    When we flew to Philly for Zoe’s hemi-Fontan, her cardio also asked us to come directly to the ER. She was just fine, sats steady and we headed to the hotel.

    Prayers for a successful cath procedure!

  5. I do believe that’s the same CC doc whose overall attitude made us decide to go back to NCH/Columbus for all of Gabe’s cardiology appointments. He chastised us for not having the surgeries done locally and his office totally dropped the ball on getting the reports back to NCH in the 24 hours that both parties had agreed on.
    Good luck in Boston! I will be thinking about your family and sending you all the positive vibes I can spare! ♥

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