Cardiology Appointment

Today Ashlyn enjoyed painting (she feels that a day isn't really complete unless she gets to "do art"), and Lynnea had fun playing with her toys on the floor in the living room. Lynnea didn't require much oxygen during the day, though last night she required oxygen all night long, and even with some oxygen support dropped her SATs several times throughout the night.

This afternoon we took Lynnea to her follow-up cardiology appointment at the U of M with Dr. Kochilas. Even though the things that he told us were nothing we didn't really already know, some things never get any easier to hear. He pointed out that all of Lynnea's problems (her insufficient left ventricle, her pulmonary vein atresia, and her compressed mainstem bronchus) all add up to things being pretty much as bad as things can get -- lots of major problems, no real solutions. He told us that there are really three options that should be considered. 1.) Trying to repair the anatomy she has, but not doing it here -- he recommended that we let the surgeons in Boston evaluate her case to see if they have anything at all that they can offer her. 2.) Evaluate her for a heart transplant. 3.) Do nothing.

First of all, he wasn't really recommending that we take the third option, but he had to throw it out there. He would rather try something, even if it's a long shot, than not do anything at all. We agreed to sign a release of information form so that he can talk to the people in Boston about options they might have for her. He warned us that there is a good chance that they won't be able to offer us anything without doing some more diagnostic testing on her, and it would most likely be necessary for us to go to Boston for the testing, and then possibly stay there for any surgical treatment that they might be able to offer. He said that anything that they would offer would undoubtedly be high risk, but then, pretty much anything that she has done at this point is considered high risk. There is also the simple fact that Boston is far away, which makes this option expensive, and inconvenient, but we told him we are willing to consider it anyway.

If it turns out that there is nothing that they can offer us in Boston, we will be evaluating Lynnea for a heart transplant. Kochilas is not recommending a heart/lung transplant because the success rate for pediatric heart/lung transplants is not very good at all, especially on someone as young as Lynnea (we would also have to travel out of state for a heart/lung transplant because they don't do them here). A heart transplant for Lynnea would be complicated because her aortic arch is still in pretty bad shape, and complicated further by the fact that she only has one good lung. She is also at a high risk of rejection due to the number of blood transfusions she has had in her lifetime, and the antibodies that she has most likely built up as a result. She is also a hard match because of her age and blood type, so getting a donor heart could take a while.

Regardless of what ends up being done for Lynnea, Kochilas felt strongly that something needs to be done sooner, rather than later because she is not in good shape, and can't continue like this indefinitely. The only reason that he did not admit her back into the hospital today is because he feels that it is very important to have as much time at home together as a family as possible. If she gets any worse, we will need to take her back to the hospital. So, we are going to enjoy our time together as long as we can.