Umm... hold that thought. As our long day at BCH wrapped up, they threw in an ECHO too for good measure - Sarah was bored, tired and wanted to get outta there. Finally Dr. Lang came in to meet with us to discuss how things looked. And after the usual chit-chat, cursory overview, there was an exhale, and a "Well...". That's when I just shut my eyes and knew we were not in a good place. Something was not right and she would need another surgery. Sarah knew too, even though the doctor and I spoke as vaguely as possible to not alarm her, but specific enough so I would know the gravity of the situation.
Sarah's repair had degraded significantly since her last check in March 2014. They were a bit puzzled, surprised and extremely sorry. But it is serious. Her 'repaired' aortic valve was not functioning well at all, there is significant regurgitation and the left ventricle is 'quite large' or 'impressive' as he put it. They asked how she was feeling, expecting her to by symptomatic - I said quite the opposite, just got back from a long hike at the Basin at Franconia Notch, and she was in the lead, taking the hard way up. That is great, but they were surprised by the condition of her heart/valve that she felt so normal. Tough kid. Well, we knew it had to be soon, talking next month or so. I could not get my head around it - felt so alone at that moment - why her again?!?! The doctor and surgeon would be in touch with us the following day to iron out the details and come up with a plan. We were sent on our way to enjoy our 3.5 hour drive home with heavy minds and heavy hearts. What do we talk about on the way...
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| Sarah (left), Katie and Molly at the Basin at Franconia Notch. |
Well we talked all about it, and it was a good talk. I had to get myself together mentally and deal with this - I had to be strong so she could be too. We discussed it, how it sucks, but it must be done. Sarah was on board, what ever we have to do Dad. "Just one thing... Remember when you promised if I even needed surgery again, they would put me 'out' before pulling the chest tube? Uh.. Yes... Well, can you just make sure they do that - that's all I care about, the rest is fine." The chest tube is not fun, and I promised her this - and I must keep it. Note to self, to discuss this with Dr. Emani. Seems like minor stuff, but it is what the kids remember and fear - so if we can make that experience a non-issue, then we did some good. Finally after a long pause in the conversation, Sarah sighed and said, "sorry Dad I have such a bad heart..." How do you reply to something like that... I assured her, her heart was beautiful in many ways, and was not a bad heart, it just needed a little help - and that's what we will do!
8/28/2014
Dr. Lang called promptly around 10:00 a.m. the next morning. He had more time to review the data, and they were even a bit more concerned. We needed to act fast - but very good Sarah is still asymptomatic. He looked at dates and tentatively scheduled 9/4 (so soon!!). Ultimately after talking with Dr. Emani we settled on 9/9 for various scheduling reasons. Still very soon. We also came up with the valve replacement solution that we and the docs are comfortable with. We will be using a bio-prosthetic valve (Magna-ease) which Dr. Emani has had great success with, and he hopes to get 8-10 years out of. Hey, that is a hell of a lot better than 1.5 years. Time is what we want, enough to let the medical field advance, in hopes that when she needs another surgery they will be using the trans-catheter procedures for aortic work. That would mean no more open-heart surgery. In addition, many thanks to our good family friend Dr. Todd Roth (a pediatric cardiologist), who has been at our side advising and consulting us - he helped us greatly manage through our last experience. He concurs with all that BCH docs are recommending, and that is nice to know we have consensus. So we are scheduled and ready to go... Lots to do before then, but for now, we will enjoy our Labor Day weekend with my brother Morgan's family - put them to work harvesting our hops.
Many thanks to all those that have reached out with thoughts, prayers and love. That is what we need right now. I will do my best to keep this updated as we get closer or if anything changes. We appreciate all the support and offers to help out - we will definitely reach out if we need anything.
-Pete
