We had a clinic visit last Thursday (one week post-discharge). We were super excited that she had made it feeling “ok” for that long. Although Sarah’s albumen levels were pretty low, she was still feeling about the same, so Dr. Everitt said she was not inclined to admit her just to “play the numbers game”. So, more than excitedly, we came right back home. However, within a few days, she started feeling worse, and her daily vitals showed it. Sarah decided by Tuesday that she needed to come back for another tune-up. We headed down to Salt Lake on Wednesday afternoon and Sarah checked herself in for a week or so to get her swelling and protein levels under control and help her feel ok again. Dr. Everitt felt like we needed to run some diagnostic tests to be sure that we weren’t overlooking an infection or blockage or something that could be causing the PLE to act up like this. Everything came back normal and basically unchanged, which means there is no reason for the PLE to be so stubborn, except for her heart failure. Being up against chronic PLE (that we can’t get under control anymore, but just treat the symptoms), Dr. Everitt proposed that we file an exception that would move her to status 1A on the transplant list….
We received a copy of the letter today, and she’s officially been moved up. From Status 2 to 1A in 8 weeks…WOW! We’re shouting a “SAD HURRAH” at that news. It means she gets moved to the top status on the list, which means she’ll get a heart sooner, but it also means that she lives at the hospital now until after her transplant. That’s good, because she can get the protein infusions, diuretics, and nutritional help she needs to feel better and be in good shape for her transplant. But, it’s bad, too, because it means that she LIVES here now. It means that she’s sick… And it means that we’re officially a family apart, which adds a whole new level of stress and uncertainty and emotions we can’t put a name to. If she was just a college student leaving home, this separation would be difficult, but this is so much more than that. Uncertainty is something we’ve learned to live with for the past 8 weeks, but now there are plans and decisions to be made in the midst of more uncertainty.
We’re grateful for the love and the many offers of help and support we’ve received already, and promise that when we get our heads together and on straight, Steve and I will let you know what we need and let you help. We are so very grateful for the many blessings of our Heavenly Father. We KNOW He has a plan for Sarah and for our family. We KNOW we are growing and changing, and becoming more like Him through these experiences. We KNOW we are going to be stronger (somehow) at the other end of this. And, we KNOW that our Savior loves each one of us and KNOWS how we feel and can succor us and lift our burdens when we let Him. For that knowledge, we are so very grateful, and find hope and peace in our struggles.