Meeting with Dr. Heinle

We met with Jake's surgeon, Dr. Heinle, today to discuss his upcoming surgery. In some ways it was quite comforting to see his staff and him--like seeing an old friend again. I think it's because they got us through the first most trying time in our life and are about to do it yet another time. His P.A., Mary, was our favorite person last time and she was there today and remembered Jake and he just loved seeing her--almost like he remembered her too. She met with us first and discussed what had happened in the past 16 months or so since they had seen us and updated his file. Then when Dr. Heinle came in to talk with us, she took Jake and Grace out so we could concentrate on what he was saying which I thought was amazing. Jake rode a toy car up and down the hall entertaining everyone and Grace was passed around to all of the nurses.

Dr. Heinle explained the surgery in detail and then answered all of our questions. Basically, they'll be peeling this membrane off of his aortic valve, but he will also cut away some of the muscle surrounding the membrane which will increase our odds that it won't grow back. He said about 1 in 10 do grow back. They'll make sure it hasn't damaged the valve and also look at the mitral valve. The mitral valve has started leaking again lately and he's hoping this membrane is causing it but will re-examine the stitches on the valve from last time and repair any that may have slipped out of place. If the membrane is causing the leaking, then repairing it should fix the problem. If it's not causing the leaking, and it continues after surgery that's not good because that would be a whole other problem. He'll be on the heart/lung machine again and will most likely require a blood transfusion since he weighs more this time. The whole surgery should take about six hours.

He said they don't know why membranes like these occur. They have several theories, but no definite answers. Last year he did about 50 operations similar to Jake's first surgery and only 2 cases developed these membranes so its not exactly common, but it does happen sometimes. He doesn't know if Jake will require additional surgeries. In the best case scenario, he wouldn't, but he said time would just have to tell.

Mary said his recovery will be quicker this time in that he'll be moving around faster afterwards since he's walking since the last surgery. He will be in ICU 2 days this time (instead of one last time) because of the different nature of this surgery. Altogether he should be in the hospital 5-7 days. She said he may cry more initially since he understands more what's going on, but once he gets moving his chest should heal more quickly. She noted how busy he is and that I would have my work cut out for me before and after the surgery when he's on "house arrest." I've been going through the book I bought about entertaining the toddler at home and making a list of what we can do and what supplies I'll need.

Its also time to start wrapping my head around how to juggle Grace during the surgery. It's time to stop avoiding thinking about it, and face what's going to happen. A friend from church has volunteered to watch her the day of the surgery and then my parents will be here all week to help. Last time I didn't leave the hospital once while Jake was there; this time I will have to also think of Grace's needs. She'll need me that week too! Once Jake gets in his regular room, she can be in there some during the day and I'm thinking my mom and I might alternate nighttime duty with her...I just have to figure it all out. The good news is she can take a bottle now so I can pump milk when I need to for her and have others feed her for me. I definitely am not ready to give up nursing so thank goodness for my trusty double pump :) It will work...

I'm just so thankful for the amazing hospital we have just an hour from our house that has a pediatric heart staff that is one of the best in the country. I studied Beth Moore's Esther study last spring and I can't help thinking of Esther's key verse, "for such a time as this." We were placed here for "such a time as this" and God is putting all of the pieces together to heal Jake once more.