We knew that Andy would be admitted overnight after the surgery so he could be monitored. We came prepared with overnight bags and his new favorite soft blankie. We talked in the pre-op area as nurses and doctors came in and out prepping him for the procedure. It was all too familiar that we were back in this place; back to the waiting, the unknown, and the hoping for answers.
I said goodbye and held back the tears as they wheeled Andy to the operating room. We were told that the procedure would be a long one and could take anywhere from 5-7 hours. The doctors would be mapping out his heart, looking for the inflamed areas to treat, and taking more biopsies. The nurse had my cell phone number and would be checking in with me every hour, letting me know how things were going.
Waiting is the worst part. A long time ago I worked as a surgical tech in the OR, which might have made this process worse for me. Knowing the steps of setting up and scrubbing in and looking at a patient wondering whether you will find good or bad news, or answers to your questions, made this current experience more troublesome. My mind wandered as I updated Facebook, watching the time, drinking more coffee and eating the hospital tater tots that I had grown so fond of.
My mom and my sister were on their way to wait with me. While I sat in the cafeteria, the doctor who had put in Andy’s ICD stopped by to check in with me. He was so sweet as he explained to me that he had gone into the OR to check on Andy and that things were going well. He came by a second time, once again reassuring me that they were going to figure this thing out.
After only five hours, the nurse found me in the waiting room and told me that they were finished. Andy handled everything just fine and was in recovery; always comforting words to hear. I would be able to see him soon. While I was still waiting, his cardiologist came to talk to me.
“The PET scan showed quite a bit of inflammation, leading me to believe this is sarcoidosis. I can’t say it’s for sure that, but the biopsies should confirm that. Either way, the inflammation is causing a lot of problems and I was able to treat some areas, but not all. I want to start him on a pretty high dose of Prednisone right away to try to get the inflammation under control. I’m also calling in a pulmonologist, a lung doctor who specializes in sarcoidosis, and we will work together to treat this. We will get this under control.” Dr. Robinson looked serious, but confident. I needed that confidence.
By the time we were finished talking, Andy had already been taken to his room. He had to lay flat and not lift his head or move at all for several hours. I told him what Dr. Robinson had told me, which all had to be repeated since he was still heavily medicated. As soon as he was able to move, he was ready for more visitors, of course. He stayed nice and comfortable as the new medications were introduced.
The next morning we woke up tired, and Andy sore from all the work that had taken place the day before, but overall, he had had a good night and slept pretty well. He was hungry and ready for some food before we would talk about him being discharged. As we were talking, waiting for his breakfast to arrive, his heart monitor alarm started beeping. His heart rate went back up to 120. We had learned that this isn’t scary high, but definitely not normal while just laying in bed, and especially with the medications that he was on. His heart rate came back down for a few beats, but then shot back up to 125, then down, then back up to 140. The nurse came quickly. Andy wasn’t feeling well. He laid his head back on the pillow and closed his eyes, looking tired from all that he had been through already. Here we go again.
The fear rushed back and the lump in my throat returned. I thought this procedure was supposed to make things better? Why is this happening again? The nurse paged the doctor while ordering a 12-lead-EKG to record the activity in his heart. More medications were given and an oxygen mask was put on Andy to help him breathe. I wanted to hold his hand and do my best to comfort him, but there was no room with all the machines and staff trying to help him. I stepped back and stared at the monitor. 145 beats per minute. 90 beats. 140 beats. 85 beats. 164 beats. Dear God, please don’t let this happen. I’m not ready. 85 beats. 175 beats. I knew once he hit 182 his device would shock him again and I was terrified of watching that happen a second time. Please somebody fix this. Make him better. 100 beats. Andy breathed in the oxygen and remained totally calm. I paced and prayed and pleaded. The stat nurse was paged on the overhead speaker. The cardiologists came in, listening to his heart, assessing, discussing which medications to try next. I stood frozen in the corner.
The stat nurse hugged me, “He’s going to be okay. He will come out of this. I know you’re scared, but he will make it.”
I just shook my head and cried. I wasn’t so sure. This went on for a couple of hours. I texted family and friends and asked for more prayer. Andy would fall asleep off and on in between the v tach episodes and he was worn from all the heart activity. And finally, his heart was stable. It would still go up every now and then, but not nearly as high. He rested, I updated, and arranged for the kids to be taken care of once again, as he obviously would not be discharged that day.
Later on that day it seemed like Andy’s heart was finally calming down. The v tach episodes were further apart and not lasting as long. By this time he was on around ten different medications. Some for the inflammation in and around his heart, some to keep his heart beating regularly, at a good pace, and some to help with the side effects from the other medications. His anxiety was still high from getting shocked and sleep didn’t some easy.
We were back to sitting, waiting, and praying for the medications to work. More arrangements were made for the kids to be taken care of and yet another call to my boss saying I would miss more days of work. Thank God for the understanding from my job. They were gracious as I didn’t know what would happen from one day to the next and my training was a mess from missing so much work.
The doctors didn’t want to send Andy home prematurely. They wanted his heart to be very stable and make sure he was handling the medications well before discharging him. We had learned to have low expectations when it came to finding out when he would go home. Since we weren’t exactly sure when that would be, I knew I needed to go to work and check in with my boss.
I set up shifts for friends of Andy’s to sit with him so he wouldn’t have to be alone while I went to work. I woke up early on Friday morning, got ready for work, kissed Andy goodbye, and caught the bus out in front of the hospital. I sat on the bus praying that everything would go okay with Andy, fighting back more tears because I hated the thought of being away from him all day. I wasn’t far from where he was and knew I could get back quick should I need to. It was hard to concentrate that day, but we both survived. Andy was well taken care of and had a relatively boring day at the hospital. Boring is good.
I raced back to the hospital as quick as I could after work, feeling like I’d been gone for days. Andy was doing well and his doctor was talking about discharging him the next day. While we still did not have a definitive diagnosis, he was finally responding well to the treatment. We were more than ready to go home. The kids were missing their dad so much and this whole hospital thing was getting really old.
Andy was finally discharged five days after getting shocked and having his procedure. He was tired and feeling all the effects from the medications; dizziness, fatigue, trouble sleeping, but we were home. A few days later the biopsy results came back with the definitive diagnosis of cardiac sarcoidosis; a non-curable disease, but treatable. This confirmed what the cardiologist had suspected and didn’t change the treatment plan. He would continue on his meds and would have another PET scan three months later to see if the meds gave the desired results.
And so we returned home to our new normal; follow-up doctor appointments, pill boxes, weekly trips to the pharmacy, and lots of difficulty sleeping. We also returned home to meals provided three times a week, offers to help with rides to school, babysitting, house cleaning…the list goes on and on. The amount of support was incredible. We slowly adjusted and got used to this new life.
Andy had his first follow-up PET scan in April and it showed good news. All of the medications had done what they were supposed to do and the inflammation in his heart had gone down significantly. This is what we had all hoped and prayed for. This meant that they would slowly taper down two of his drugs and see how he handled it. He did well and has stayed there ever since.
It’s hard to believe that it’s already almost time for his next scan, at the end of July, where they will look again and see if there’s anymore inflammation, then reassess his medications once more. And this is how things will go for the years to come and we will continue to be thankful that Andy is here. Things could have gone much differently and I would be writing a different story. The list of who and what I’m thankful for is too long to write. I know that our family could have easily fallen apart without all of the love and support from everyone, including those we have never met. I will always be grateful.
We’re still on this journey and there are no guarantees of where it will take us. It’s possible that we could have to venture into the scary unknown places again, although I’d love to avoid that. But should we have to go there, we will hope and trust and pray like crazy for God to sustain us, just as He always has when life gets interrupted.