Severe AV Valve Regurgitation.

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I am going  to explain this in a very over simplified way but for the sake of boring you lets just say that Logan only has the blue part of the above heart.  In a healthy heart the left side has a mitral valve and the right side has the tricuspid valve.  When you have a single ventricle they call that valve just a AV Valve or atrioventricular valve. 

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There is no picture (that I could find anyway) of this valve problem on a single ventricle so bear with me – but if you pretend that in this picture that the RV (right ventricle) and the LV (left ventricle) are one, you can kind of get a picture of what Logan’s heart looks like.  (Again extremely over-simplified).    The problem is that the valve needs to close not be that open.  It has gotten worse and worse because the walls of the ventricle pull apart and so more and more blood falls back down into the ventricle instead of being pushed up into the atrium.  This situation is very tiring for Logan’s heart because the heart has to constantly try to push the blood back upwards only to have it just fall (or regurgitate) back down. 

This is bad. 

This is a BIG problem and one that is tricky to fix.  Dr. Patel (his cardiologist) said yesterday that he cannot wait till Nov. 16 for surgery and that it has to be moved up.  I contacted the cardiologist at CHOP and he agreed that this needs to be taken care sooner rather than later and most likely in the next week.  I asked him what would happen if they couldn’t fix it, and he said that there are not that many options at that point other than transplant. 

I hung up with him and remembered that a friend of mine Annamarie (founder of 1in100) always told me about the amazing work that Pedro Del Nido and his team are doing on valve reconstruction.  I thought, I might as well see what he says since this has become such a big deal.  After talking with and listening to the all the experience that he has with this difficult defect I have decided to have Logan transferred to Boston.  Dr. Del Nido would like to attempt to repair this valve as soon as possible because he said there is no reason to wait and when kids have severe leakage they can deteriorate very quickly.   Right now Scott and I are trying to make arrangements to get him admitted to Boston Children’s hospital tomorrow.  I am meeting with our cardiologist here tomorrow so he can asess if he has made any further declines in the last 48 hours and to determine if he needs a medical transport or if we can fly commercial.  I will do my best to keep everyone updated.

9 thoughts on “Severe AV Valve Regurgitation.”

  1. I knew you weren’t actually going to get any sleep. I am glad you wrote up this explanation. As much as I understand Hope’s heart…I don’t understand as much of the heart as I thought I did. You know I will be thinking of all of you today. Let me know if you need anything at all. I am a phone call away.

  2. If they clear you to fly commercial you will almost certainly require the ped or card to order a canister of oxygen for the flight. Eve didn’t even have very low sats when we flew her there…it was more of a precaution. But we hit cruising altitude and she dropped like a rock into the 70s…for her, very low. We were very grateful to have the 02 on
    board. This needs to be written up like a prescription and sent to the airline. Might want to ask the docs for an infant size mask. The one that came with the canister was adult size and I physically had to hold it on her face the whole way! You guys are in our thoughts today …your gonna be in the best of hands. Annamarie

    1. Both cardiologists agreed that Logan doesn’t need oxygen on the plane. His stats are really good. Even if he dropped a bit because the plane ride isn’t very long it wouldn’t affect him. He has super long crying spells where his 02 drops a lot and sometimes those last for hours and hours and they haven’t adversely affected him. Although I do have portable oxygen for him anyway, and if the airline doesn’t mind I may just bring it in case.

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