At this point, the team of specialists was suspicious of two possibilities for what was causing Andy’s heart to continue racing. One was a somewhat rare genetic disease called ARVC, which would involve all kinds of genetic testing, not just for Andy, but for each of our kids as well. Of course this sounded scary and awful, especially the idea of our kids possibly facing these same problems. The second was a disease called sarcoidosis. This is an inflammatory disease which can affect other organs, most commonly the lungs, eyes, lymph nodes, and skin. Cardiac sarcoidosis (sarcoid of the heart) is more rare, but seems to respond well to treatment.
It was determined that a biopsy of the heart would be the best way to confirm a diagnosis. The trouble was, it was now Saturday morning, which meant that the biopsy wouldn’t be happening until Monday. So our weekend was spent full of visitors, phone calls, and doctors checking in. The flood of support was overwhelming. People we hadn’t seen in years came to visit Andy; he has that special something. He was upbeat and positive, trusting in the Lord for his future. Over and over, the hospital staff asked, “Who is your husband? How does he know so many people? How many people have come to visit him?”
Later in the evenings Andy was exhausted; between all the conversations and the off and on episodes of v-tach, he was worn out. I was tired from all of it. Andy would fall asleep, I’d turn on Christmas music, sit down, and write. I tried to send out updates, respond to texts, and do some online Christmas shopping because oh-my-word it’s Christmas time and I hadn’t done a thing. When my eyes wouldn’t stay open another minute, I’d lie down and my mind would worry. I’d think about our kids and wonder how they were really doing with all of this. I knew they were well taken care of by family and friends, but how were they really feeling? And sometimes I’d let my mind go to places it shouldn’t; the dark places where hope has no home. Sometimes Andy’s heart alarm would start beeping and I’d sit up watching it like a hawk, while the nurse would come in to check on him. He’d usually sleep peacefully through it all. And at perfect times, someone would text; sending prayers and love, or the perfect scripture for the moment, reminding me of hope.
Once I finally got the picture that this hospital situation wasn’t ending anytime soon, I needed a couple of things from home; a soft, cozy blanket, our own pillows, and some Christmas lights, because I needed some Christmas cheer for crying out loud. Room 5346, ICU was a cheery place to be, believe it or not.
Sunday night we were told that they would come to get Andy sometime the next morning, for the biopsy, and he needed to fast until then. The day was full of many visitors and meetings with doctors. It was a long day, but longest for Andy who was hungry, grumpy, and uncomfortable after waiting all day with no food. They finally arrived to take him for the biopsy at 5:30 that evening. They were trying to coordinate several doctors’ schedules to have them all be present for the biopsy, which isn’t an easy task, apparently. This was the most distraught I had seen Andy up to this point. Take away his food, and that’s when you’ll see him upset. As we were heading to pre-op, our sweet friends, Ben and Hannah, showed up with a Christmas tree. I’m not sure if this is frowned upon in the ICU, but they set up that little artificial 3-foot tree and decorated it so it would be all beautiful and lit up when we came back. It was my favorite thing in our room.
A friend came to wait with me, ready with a pan of enchiladas for when Andy came out of the procedure. He ate faster than I’ve ever seen him eat. The doctor came to our room letting us know that the procedure went well. They were able to get 5 biopsies from different areas of his heart, hoping for some answers, and we should get the results within the next couple of days. So, time for more waiting. The doctor also prepared us for the fact that sometimes these biopsies can be inconclusive, but we would hope for the best.
We had and still have such incredible support from family and friends. Not once did I wonder what we would eat for a meal, or how the kids would get to and from school. The endless supply of coffee from visitors also kept me going. And my job that I had only worked 2 weeks at was incredibly understanding and supportive; putting up with the unknown. We were less than a week out from Christmas and my brother and his family from Nashville were visiting for Christmas. Thank God for that trip, that was already planned, because the kids were having a great time and not spending their Christmas break worrying about their dad. We were still hoping and praying to be home in time for Christmas.
The days wore on with not much change. Andy was on a Lidocaine drip through his IV and they wouldn’t move him to a different floor until he could get off of that medication. The trouble was, it was that medication that was keeping his heart stable. But this is a medication that wasn’t safe to be on indefinitely, so they slowly began to taper off his dose, while introducing a beta blocker medication to keep things in check. This seemed to be working pretty well and Andy was begging for a shower. Up to this point, they wouldn’t let him take the heart monitor off, which meant no shower. Since his heart was behaving, Andy talked his nurse into arranging for him to shower. This took some planning because no one in the ICU usually gets out of bed, let alone showers. There are no showers in the rooms. I had to go to the family lobby to shower, or go home.
The nurses taped up both of Andy’s IVs, escorted him to an empty room in another section on that floor and gave him a time limit to take a quick shower, while having his heart monitor off. It was a big deal and he practically got a standing ovation as he made the long walk down the hall to the shower. He was like a new man; a new man that was extremely exhausted after all that activity.
We were still waiting to hear back on the biopsy results and I was getting tired of responding to all the “did you get the biopsy report back yet?” texts. We were told that they were working on moving Andy to another floor and getting him out of the ICU, but it felt like it was taking forever. By now, I had several sweet people offer to get stocking stuffers for the kids, which was amazing since I hadn’t even thought about that. I was working on the Christmas shopping online, but the stockings were forgotten; one more thing that someone else took care of. Somewhere along the line another friend set up a Go Fund Me account to help with our medical bills, which were stacking up by the minute. We were overwhelmed by all the love and support.