Major Change of Plans

We have had a sudden, surprising change of plans. (Apparently that is just the way we do things.) 

During Ramona's transplant evaluation earlier this year, we had asked if there were any other surgical options for her other than a transplant, and we specifically asked about the possibility of a myectomy, which is an open-heart surgery where they essentially carve out some of the extra muscle inside the heart. We knew that this is sometimes used as a treatment for her condition, but it was always iffy if it would be an option for her due to the severity of her case. At the time of her evaluation, they said she was not a good candidate for it. (It is most often used when just one part of the ventricle is thick, and hers is (very) thick all the way around.)

However, now that they have had time to get to know her and her heart, they decided to get a second opinion from another hospital that has more experience doing myectomies on hearts like hers. They sent all of her scans and information to them, and that hospital confirmed that they think she would be a great candidate for this surgery! The expectation is that this will improve her heart function and lower the pressure in her heart and lungs. (They also want to upgrade her pacemaker to a model that includes a built-in defibrillator as an extra layer of protection.) She would probably still need a transplant in the future, but, the hope is that this would help her feel better and buy her some more years (hopefully many more!) with her own heart. Transplants have a limited life and come with their own complications, so the longer we can keep her own heart, the better!

So, all that to say, Ramona has been moved to the "inactive" transplant list for the time being, and it sounds like they expect to get her in for surgery within the first few days of September. AND, as if that isn't surprising enough, she's been so stable since we've been here that it sounds like there is a chance she might be discharged to go home for a couple of weeks until her surgery. So we're eager to see how that will pan out. 

It's been a wild day. To suddenly have a non-transplant option before us is just...wow. We're feeling very overwhelmed and very grateful. 

Speaking of being grateful, while this season has been so stressful in so many ways, Nathan and I were just talking about how we have had absolutely no stress in regard to things like feeding everyone, paying for gas/parking, finding things for the kids to do or play with, or being able to get random necessities as things pop up. Literally every need we've had has been met, and met abundantly. We have so many people to thank for meeting our physical needs, for encouraging us and building us up in love, and for praying relentlessly for us. 

And then, a new surgery option on top of all of that. I recently read a quote that said, "All this, and heaven too?" and I just keep thinking that over and over tonight. 

Here's how you can continue to pray for us in the coming days/weeks:

- continued wisdom & skill for the doctors as we pursue this new plan

- continued protection for Ramona whether we're here or at home

- for a safe and successful surgery when the time comes, and that it would yield wonderful results that carry her for many years to come

- thankfulness for God's unwavering faithfulness through all the highs and lows of life, so much more than we could ask for or imagine

- please also pray for our best bud Marshall and our other friends here that are waiting for new hearts, too ❤️ 

 "But God shows his love for us in that while we were still sinners, Christ died for us."

- Romans 5:8 -