I’ve started this post several times and can’t figure out exactly how to explain all that we’ve been through this week and what we’ve felt. I wish I could rewind the past few days to get it all down one day at a time, but I’m also grateful I can’t because I really don’t think I would want to relive it.
High… Overwhelming Disbelief, Excitement, Anxiety, Joy, and Gratitude – Tuesday night, January 22nd, just 5 days after Sarah was officially listed for transplant, she got the call. None of us could believe it. She was at Grandma and Grandpa Dixon’s house spending some time with them. Her phone rang and as she looked at her phone, she just knew… She answered it, and began to cry so hard she couldn’t talk. She was bombarded with so many emotions at once, she couldn’t even think. Meanwhile, Grandpa (my dad) called me to tell me she was talking to them on the phone, that there was a heart for her, and we needed to get ready to go. I knew he wouldn’t joke about something so serious, but I honestly couldn’t believe what I was hearing…. I hadn’t even made my packing list yet! Steve could tell by the look on my face, and called all the kids into our room. We cried and laughed, and started running around like maniacs packing through tears while Mom and Dad brought Sarah home. Nathan, our 7 year-old came in and said, “So, are we celebrating?”
I’m sure it wasn’t very clear with all the tears. I wrapped him in a giant hug and assured him that we were joyfully celebrating and scooted him off to grab more stuff. I was grateful that Steve had finished our laundry and filled up the car with gas the night before. (I’m inclined to think that was not a coincidence.) We packed, locked up, and headed to the freeway. Within 3 hours and 4 minutes, we were at the hospital checking in for Sarah’s new heart. Spent the next few hours meeting with the Transplant team, hugging and loving, praying, signing papers, receiving instructions, watching how excited her doctor was for her, and praying some more. We were told more than a few times it was a really good heart, and that they anticipated things to go very well. We prayed mightily for Sarah’s health and safety, and for comfort and love for the dear family who had lost someone they loved that night.
Low… Deep Disappointment and Frustration – Wednesday morning, after a very short restless and sleepless night, we were up by 5:00 meeting the anesthesiologist and surgeon, signing more papers, and getting Sarah prepped for surgery. It was scheduled between 7:00 and 8:00. At about 6:30, the surgeon came back and pulled us into the hall to tell us that when the procurement team got in to look at the donor’s heart, it had an enlarged coronary artery and could not be used successfully for transplant. I was again beyond belief and Steve just pulled me in his arms and assured me that everything would be ok. We went in to the room to tell Sarah and she crumpled, much like she had the night before, but this time with very different feelings.
High… Hopeful Peace and Gratitude – We were told that since the surgery was cancelled, we would need to wait for Dr. Everitt for further instructions. We sat quietly trying to internalize the events of the past 12 hours and make some sense out of it. We were grateful that the surgeons were careful, that the donor’s family was willing to honor their loved one by helping ours live, and that Sarah would be going back home with us to wait for a perfect heart. We felt peace because we know that Heavenly Father is in charge of all of this, and although we were disappointed, we are hopeful that another opportunity will come soon, and exactly when the time is right.
Low… Sadness, Disappointment, Distress and Exhaustion – Within an hour or so, both of her cardiologists had been by and consulted, and decided together that our next step would be to keep her admitted and begin some proactive therapy to help her be stronger and a better transplant candidate. They talked about putting in a PICC line (a more permanent IV in her upper arm that has a catheter to carry medicine directly to her heart) for a new medicine (milrinone) to increase heart function and possibly some nutrition. This plan would also need to include a blood thinner to keep the line from clotting. In the past 6 months, her oxygen and protein levels have decreased and her tune-ups have been necessary more often. Dr. Everitt is also concerned about her nutrition and wants to “beef her up” a little. Since she doesn’t absorb nutrients correctly, they can use TPN (IV nutrition) through the PICC so it will go directly through her bloodstream. The healthier she is, the better she will recover after transplantation. PICC lines and certain intravenous therapies can also move her up to a 1B status on the list. Sarah was sad to not be going home, and felt a lot of anxiety about new treatments and all these new terms she didn’t know. By the end of the day, Sarah was checked into CICU (Cardiac ICU, in order to monitor the milrinone), said goodbye to everyone but me, and was exhausted and emotionally drained.
It’s been almost a week since we got the call. It’s been a long, tired week, but looking back, there are so many things to be grateful for. There is a reason that we got that call, even though the surgery was cancelled. I’m not sure if cancelling was the blessing, or getting us there was…perhaps both. Heavenly Father has shown me more than a few reasons why each was a good thing, and for those glimpses of understanding I am so grateful. Even though it’s a total bummer, Sarah will be so much healthier while she waits, and will be so much stronger for recovery when her donor heart does come. It’s all in the Lord’s hands, every single step. And we’re okay with waiting for perfection.