Friday, May 15, 2015

The Beauty of Second Opinions

Unfortunately, yesterday's fifth embolization was not a success. There is one last massive vessel that looks like it could be causing the remaining bleeding. They have tried to access that vessel both last Friday and yesterday, but they cannot get to in a way that they can safely embolize it. It's in a less than ideal location, off the subclavian artery, that makes it risky if they cannot get exactly where they need to be to release a coil. As of now, our hospital's IR team seems to think they cannot do it, and is suggesting a transplant. We do not feel that the logical next step is jumping to transplant...seems like we should work a little harder to fix his current lungs (which sit at 72% lung function as of two weeks ago) before ripping them out and throwing in new ones. For us, we believe second, third and fourth opinions, off site, are necessary as other teams at our hospital, like thoracic and vascular surgery, are unwilling to take the case (at this point). Additionally, we would not choose this hospital to be transplanted at, so all in all, this isn't the right place for us for any of our next options, as much as we love our CF team.

So right now we are seeking second, third and fourth opinions from different docs/hospitals across the country to get their thoughts on logical next steps. We believe that sometimes it just takes the right person with the right skills and knowledge to fix certain problems at the right times, and do not believe that this IR team is the best we can find to fix this problem. We are so thankful that things have settled a bit and that the bleeding is so much less than it was, giving us the luxury to look around for second opinions while it is not life and death. We are choosing to rejoice in small victories, like that, as we continue down the road to recovery...hopefully with his lungs!

Specific Prayer Requests:
- No more bleeding. Boom. I said it. Let's just get bold and ask that God does the healing. We know that our God is big. We know that He created the very process of clotting. Join us in boldly asking God to clot off the area the blood is coming from.
- Good second opinions. We don't care what they are, we just want options. We know that God has gifted people in very unique ways. We are hopeful we can find the person who God has specially equipped his/her hands to fix this problem.
- Peace and patience. We understand that much of this is out of our control at this point. We will continue to do what we can, and pray that we feel at peace about what decisions and next steps we need to take.

Thank you for joining us, arm-in-arm, on our journey. Prayers are the best way to support us and the best medicine!