-Our cardiologist presented Grace's case at the Cardiology conference at 7:30 am. The results were pretty much the same as what we discussed with her throughout the day yesterday, they believe that something must be done with the mitral valve, so it may make sense to go to Boston for that or they are willing to do their strategy at TCH (take down what was done on the last two surgeries and go to a single ventricle). The only other thing that was brought up is the risk associated with flying Grace to Boston (it could cause worsening pulmonary hypertension, etc, so she could arrive in Boston less stable than she left TCH).
-The chief of Cardiovascular Surgery came by to talk to us and reiterate that he didn't want us to feel like they were kicking us out of TCH. His visit would have been brief, but I opened my big mouth and asked his opinion about something (which probably wasn't my brightest move because I should have known what was going to come next). He went on to highlight/rant that Grace was in bad shape, he was really mad at Boston and said that he would have never attempted the bi-vent like they did, as if it was a negligent decision on their part, etc. I'm not saying that Boston is perfect (because nobody is), but you aren't #1 in pediatric cardiology year after year because you are negligent. He did say that he wishes he was involved in our case from the beginning and that we had been treated differently at TCH before we made the decision to go to Boston. Apparently, he has been made aware that we had a bad complication that should have never happened and our relationship with our old cardiologist led us to feel as though we had no say over Grace's care (we were originally just told what they were planning to do, rather than making us feel as though we were involved in the decision; my questions and concerns weren't really answered; and we would continually get inaccurate information, which made us very uncomfortable with the palliation that we were being offered at TCH. Remember, our cardiologist warned us that the chief of surgery is passionate, persuasive, and charismatic, which he definitely was, but despite all that he had to say, we still feel more comfortable in Boston (in fact, our discussion may have even increased our comfort in going back to Boston- Lord willing of course).
-We have been praying without ceasing about what the Lord would have us do for the next step in Grace's care and we know that y'all have been faithfully lifting us up and covering us in prayer too. At this point, we feel like it's Boston or bust; however, there is still just one detail that is holding us back at this moment and that is the insurance approval for the transport. My insurance should cover the flight at 100% because we have clearly already met our max out of pocket, however, it's up to our insurance to decide if this qualifies as a "medical necessity." Therefore, we continue to sit and wait for their decision... the hope is that we will have a decision by tomorrow morning. While that part of the story is so frustrating (the waiting game), we have prayed specifically that God's finger prints would be evidant all over the situation as a reminder that He is in it with us and leading us into His will. He has done that in some pretty amazing ways, so I will share one with you right now and more to come...
***over the weekend I received a phone call that took my breath away and made me sob out of gratitude. The VP of my Division at work called me to express her care and concern for Grace and our family. She shared that they want to help alleviate any stress over the financial burden of getting Grace to Boston, if that is what's best for her and our family. Her phone call was way more than just words because they put some serious feet behind their heart to help us out, by involving a number of senior leaders to troubleshoot; communicate with my insurance company; help get answers over the weekend about coverage (I was unable to talk to anyone from our insurance company because they are closed on the weekend for average Joe's like me :-); get an expedited review; and making sure that there isn't anything else that they could do to support us. This was all done over the weekend, throughout the day today, and into the evening, on their free time! I have always loved my job at Pfizer and have been beyond grateful for it, however, the support that I have received on every level (counterparts, my boss, regional manager, even the VP of our Division, and other senior leaders) has taken my love for Pfizer to a whole new level! It's one thing to work for a great company, under great leadership, but for those leaders to demonstrate their genuine care, concern, and support for our little angel (and the rest of our family) during the toughest time in our lives is truly a priceless gift!!!
-if it is indeed the Lord's will for us to go to Boston, that the insurance approval for the life flight would be approved and executed seamlessly
-if it is approved, that Grace and David would have a safe flight with no complications
-the kids and I would handle the separation from the rest of our Ducks well because we are all a little heart broken about being split up again under these circumstances (our Gracie Doo being in such a critical state and the uncertainty about the future)
Buzz, Woody and Bullseye came to visit Grace today (it's amazing what you can find in a Mom's purse)...
The story of my life :-)