Liver, Lunch and Love

A couple of weeks ago, shortly before we dropped our girl off for her college adventures, I took Sarah down to Salt Lake for a liver clinic appointment. We left super early in the morning to be there in time for an 8:00 appointment at the U. We’ve decided we really like that clinic. Kerin, the nurse practitioner we see, is super nice and thorough. After casual conversation, she examined her and then talked to us about her last MRI in July. Comparing it to the one 8 months before that, Sarah’s liver is not only smaller, but the nodules seem to be smaller, and everything indicates that her liver is getting better. Because severe liver damage in congestive heart failure patients is so common, it has been re-categorized and is now referred to as “cardiac cirrhosis”. The blood wasn’t pumping back out of Sarah’s liver the way it was supposed to, so her heart was causing damage to her liver. When we “fixed” the source of the problem, her liver responded in kind and is now healthier than it’s been for several years (at least). It will take time with her healthy new heart for her liver to heal completely, but it’s well on its way! She may always have nodules and scarring, but the kind caused by heart failure are very rarely cancerous or turn into anything to be concerned about. Kerin suggested that because this trend of healing should just continue, she was going to talk to the team about long-term plans. She didn’t think there would be a need to repeat the MRI every six months anymore, and that maybe our visits could be annually, or even release Sarah from their care completely. The heart transplant team can keep an eye on her labs that show liver issues, and refer her back to clinic if there are indications of problems. Amazing.

We took a walk across the sky bridge to Primary’s to visit nurses and say hi to some of our favorite people there. We got to see a couple of our favorites that were working that day, and were amazed at the techs and nurses she didn’t have often that remembered her so well (by name) and were so happy to see her. Emily (one of our favorite nurses) said that she couldn’t believe how different Sarah looked and was so grateful to see the “after” of one of her sweet patients. She said it’s really a treat to see them when they’re healthy, and it doesn’t happen often enough. We went over to say hi to our friends, The Rainbow Kids Palliative Care Team, and wandered around until we found their new offices. We gave reports and got hugs and were invited to the lunch they host every Tuesday for parents of their patients. We left the hospital for a while to buy Sarah’s books and supplies, and get a couple things figured out for school at the LDSBC the next week. We headed back to the hospital for free lunch, and to see the rest of the Rainbow Kids. Usually when we visit, we only get to see a couple of them. We were go glad (in this transitional time for Sarah) to have been able to see all of them that day! I’m not sure how many times I heard them say things to her like: “Ya know, Sarah, we’re right up the hill/just a phone call away/your support away from home/here if you need anything….” I was so relieved especially to hear one of them say, “Sarah, you’ll always be one of our kids.” I hope she will use that resource to help her out if she’s ever lonely or struggling and doesn’t want Mom or Dad to know. It made me feel a little better about her being away from home.

During the lunch, we met a sweet mom from the Logan area whose newly adopted baby daughter was there recovering from her first surgery. She was born with a few of the same heart defects Sarah had. We had a great visit and loved hearing her tell of her sweet angel’s arrival and journey so far, and then shared Sarah’s story with her. She was so grateful to have met a fighter—a survivor—so early in their journey that could give her so much hope for her sweet baby. I love that Sarah can be that for people. It makes my heart smile.

Because we were talking with our new heart friend, we didn’t get a chance to say goodbye to all the Rainbow Kids, so Sarah and I wandered the hallway back to say goodbye. On our way there, we ran into Sarah’s transplant cardiologist, Dr. Everitt, who we love so very much. 0106151340It was something we were hoping so badly would happen because it was her very last week at Primary’s. She has taken a position as the head of Cardiology Transplant department at Denver Children’s Hospital. She is so amazing and we know that she played a very big role in saving Sarah’s life. Because of her expertise, her ingenuity, her compassion, and her stubbornness, she was able to make things happen…just for Sarah. Besides us, there are a whole bunch of parents who entered the transplant world whose “babies” were in her care that are so sad to lose her. There will definitely be a part of each of us that goes with her to Colorado. I think it may have been a little easier on us though, because with Sarah’s imminent transition to the U for adult care, we were going to have to say goodbye soon anyway. We’re just so grateful that things worked out perfectly that we had an unlikely meeting in the hallway and she took a minute so we could all say goodbye!! Always amazed at those non-coincidental tender mercies…. We are happy for her to have this opportunity, and the kids in the Denver area are so lucky to have her.

We had a wonderful day together and enjoyed our visits with people who cared so much for her (and us) during such a trying time in our lives. There were so many hugs and smiles, it was such a boost to my soul to see how Sarah’s journey has affected so many other lives. We loved sharing perspective and faith with a new friend just beginning this journey. We loved our walk around the business college campus, and I loved watching how excited Sarah was about this new adventure in her life. We loved rocking out to Sarah’s favorite ipod playlist in her dad’s new car, and talking and laughing in our 5 hours of travel that day. I will miss those long-ish day-trips together, but am so grateful for those hours of mostly undivided attention and time these past few years. What a blessing. Love, love, love that girl.

~Julia

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