A few weeks after Erin and Andrew’s wedding I headed back to my doctor’s office for a medication recheck. So much had improved. I felt capable of what was on my shoulders and more driven than ever to feel better. December was beginning and I was so excited to be home to celebrate. The week of Christmas we got a call from Justin’s pacemaker clinic out of Bismarck. They explained in very rare cases a sensor in the pacemaker Justin has was faulting. Since he is 100% dependent on his pacemaker they wanted him to come into Bismarck right away so that they could shut off that sensor and turn on the backup one. The frustrating part of this is that the sensor they would be turning off actually reads his body temperature and blood pressure to adjust his heart rate as needed for his heart to keep up with his activity.
We headed down to Bismarck the day before Christmas to get the sensor shut off. The pacemaker clinic is in the same office as his cardiologist. Justin gets to sit in a big recliner while the put this round plastic circle wand over his chest. The wand is connected to a computer that can download information and adjust settings. The entire process takes about 2 minutes, so it’s a pretty quick appointment. They explained that the company Boston Scientific, the maker of the pacemaker, would be working on a software update to fix the problem. Once it was approved by the FDA they would have Justin come back in and update the pacemaking and turn the fancy sensor back on. Unforcanetly there was no way of knowing how quickly the FDA would approve the update, it could be years.
Christmas came and we were so thankful to not be in a hospital! We caught up with family and started to get a little sad that Justin’s Grandma Gerda and his aunt Rhonda would be moving in just a few months. They lived in the big blue farmhouse across the driveway from our house. They would be moving just outside of Fergus Falls, MN, leaving the blue farmhouse to us. Though we were excited about moving to the new house, we sure would be missing them!
Just after New Years, Justin’s sternal wound started draining again. This was very concerning. This meant it wasn’t the wires that were rubbing, something else was happening. We called up Mayo Clinic and scheduled an appointment for mid-January. Justin Grayson and I would be heading there, leaving Skyler with Justin’s mom now that Sky was in preschool. We loaded up the pickup and headed back east to Rochester, MN. Justin has not been a fan of my new Toyota Highlander for long road trips so the pickup it was. We stopped in Fargo and picked up a new stroller for Grayson before heading on to Rochester, MN the next morning. We stayed at a hotel just outside of town where parking for the pickup was much easier, and a bus shuttled us into the clinic the next morning.
We met with Dr. P and his new PA. They explained that they really didn’t know what was going on inside but that there was a chance that the infection was back. They wanted to do what they call a debridement. They would be going in and cleaning out Justin’s sternum, and valve. There was a chance that they would leave his chest open overnight and then go back in again the next morning to clean it out again. We were told that the debridement surgery should last about 2- 2 1/1 hours and that he would probably need to stay in the hospital for a day or two after. He would probably be going home on antibiotics again. They assured us that this would be much shorter of a stay and simpler of a surgery.
As we were finishing up our appointment they asked if we had any other questions. Justin spoke up and said he had been researching online some and that he had read about this happening and they ended up having to remove the patient’s sternum. The doctors kinda laughed and said that wouldn’t be happening and reminded Justing that often they only publish cases that are really extreme and that he should probably stay away from doctor google to keep his mind at ease. As true as that is, it’s hard to take doctors words when each time we have had a big surgery we have been assured that this is the end, we can go live happily ever after once the surgery is complete.
After the appointment, we headed down to the in-clinic pharmacy to get all of Justin’s pre-surgery prep. That night he would have to scrub down from head to toe with a special soap and again in the morning. At Mayo Clinic their protocol has you stick a q-tip full of this salve up your nose the night before, and the morning of the surgery. We went out to eat that night at Outback Steakhouse.
There are a few things I hate that I have routines about now when it comes to surgeries. We always go out for a nice meal the night before the surgery. If we end up having a longer stay in the hospital at least we will have had a date night and a good meal before. It also keeps our minds off the surgery some. I also only wear waterproof mascara on surgery days as well. After Outback we headed back to the hotel. I knew after last surgery that I wanted to get a room at a hotel closer to the hospital again especially now that I had a 9-month-old and a stroller to get on and off a bus on my own and trying to park that pickup anywhere near the hospital was going to be a challenging feat especially with snow piles narrowing the streets and parking lots. We got a room at the same hotel we had stayed at last time however we wouldn’t be able to check in for another day. Luckily the bus drivers were extremely nice and helped load the stroller while I carried Grayson and our bags onto the bus.
We arrived at the hospital on surgery day, reporting to the day surgery checking again. They got all of Justin’s vitals taken and before wheeling him off to surgery leaving me holding his belongings in a white bag, and his wedding ring in my hand once again. A nurse came to get all of the cardiac patient families and take them over to the ICU waiting room just in case again. She dropped us off at the desk of the ICU coordinator. The coordinator then explains to everyone that even if their loved one is there for a day surgery the family will still wait in the ICU area just in case. A surgical nurse would take our phone numbers and we would get hourly calls during surgery to update us on the progress. She looked at me and asked if I had been here before because I looked familiar. I had seen her a number of times and told her I would take the families out to the waiting room and show them how to get to the cafeteria.
I pushed Grayson’s stroller along as we headed down the hall. I pointed out the restrooms and vending machines along the way. I let them know that the hallway between the waiting room and the ICU has very little cell service, but if they stood by the window at the end of the hallway calls would go through. We got to the waiting room and I pointed out across the courtyard where the cafeteria was before letting them know what elevator to take and what floor to get off on. I also suggested they check out the chapel and library. As we got to the waiting room I was excited to see that they had finally gotten to the cardiac floor with the renovation process. New blue reclining chairs were lined up overlooking the entrance to the hospital. Across from the hospital construction on townhouses was well underway. The last time we were here I watched as they swung the first wrecking ball into an old dilapidated hotel.
I introduced myself to a family who sat down near me while I got Grayson settled in for the 2-hour wait with some cereal puffs. The K family was from a suburb of Minneapolis. Their daughter Madi was in surgery recently it was discovered she had a misshaped heart valve and arch and was scheduled for surgery before she developed any complications. Usually, this condition was found in much younger patients and was very uncommon for it to not be found until she was well into her 20’s. Madi’s surgery was expected to last about 4-6 hours, so I would probably only see them for a few hours before I was called back to see Justin after his surgery.
Two hours came and went. The surgical nurse called and informed me that they were still in surgery. I called Justin’s mom and let her know he was still in surgery. Grayson fell asleep as I called my friend Morgan to talk to her a bit. We talked for over an hour as I tried to keep my mind from wondering why this was taking so much longer.
By three and a half hours I was starting to get messages on Facebook asking how the surgery was going. I made a post stating that he was still in surgery, but I would give everyone an update as soon as he was out. At the five and a half hour mark I called Debbie we were both getting pretty nervous. A nurse walked into the waiting room and asked if Justin’s family was here. I quickly told Debbie that a nurse was there and I would give her a call back after I knew what was going on. I must have asked that nurse a million questions as we walked back to the ICU but she didn’t have any answers for me. She just said that the surgeon wanted to talk to me. We walked into the ICU through the motion activated doors and passed the oversized staff elevators. There was a buzz of people outside of a room I assumed was Justin’s.
I searched the group of people in scrubs for Dr. P he looked tired again. I was thankful that Grayson was asleep in his stroller so I could focus on what they were about to tell me. As we stood outside the glass door of Justin’s room I looked in to see him fully intubated as nurses and respiratory techs got him hooked up to the rooms oxygen and IV poles. Something looked different though. His chest seemed to be blown up like a balloon. I turned back to Dr. P to focus on what he was saying.
He explained that it was way worse than they expected. The infection was eating away at Justin’s sternum. The bone was turning to mush and there was no option but removing it. My own heart rate soared, as my hands began to sweat. What did he mean they removed his sternum, isn’t that what they promised wouldn’t be happening just 24 hours ago? He continued saying that he had called the plastic surgery team in to scrub in and see what they would be able to do. They had scrubbed in and taken a look. It was determined that they would be doing at least two more surgeries in the next few days.
You know those scenes in movies where everything seems to slow down as and get a bit blurry when someone is told some life-altering news and their life flashes before their eyes. That seemed to happen to me everyone was still moving all around me and talking to me still as I just stood there in shock trying to wrap my head around what I had just been told. I snapped out of it finally as I looked back to Justin and realized his chest was still ballooning up. I looked back to Dr. P and asked what was going on there. He said that on the way up from surgery Justin’s chest was beginning to fill with air and that they were waiting for someone to bring some tubing or something so they could release the pressure. Usually, this is a procedure done in the OR so none of the equipment was in the ICU. They were already prepping the OR for another case, so they would be doing it here in the ICU.
Someone arrived with a sterile package of some sort and they asked me to head out to the waiting room and I would be able to come back in just a few minutes. I headed to the end of the hall to get service and call Debbie back. I tried my best to explain all that was going on exactly how they had told me but looking back I was definitely in a state of shock. Debbie said she would be jumping on the train that night to meet me in Rochester. A huge snow storm was coming through the upper midwest leaving road conditions less than ideal. We decided that she would leave Skyler with my mom so she wouldn’t miss any days of school and we would have a bit more room in the pickup on the way home.
The last time we were down in Rochester the year before we had met up with a lady named Linda. She is friends with a neighbor of ours and took us out to dinner and spent some time in the waiting room with us. She said if we were ever back down in Rochester and needed anything to not hesitate to ask. We gave her a call. The train would be dropping Debbie off in a town north of Rochester the next morning but would need a ride to town. Linda was on vacation in Hawaii but she stopped everything to make some phone calls. She lined up a ride for Debbie and even got a ride for me that night from the hospital to my hotel so I wouldn’t have to leave early when the buses stopped running.
That evening the plastic surgery team was supposed to be stopping by to talk to me and explain the next steps they would be taking. I waited until about 8:30 before calling the family that was giving me a ride. I never thought climbing into a minivan of a complete stranger I could feel so relieved. God was certainly there in that van tonight. It was the first time all day that someone else held Grayson. That simple gesture felt like it was God’s way of saying he was still holding onto my family. As they dropped me off at the hotel they asked if they could pray over me. There in the lobby of my hotel, I stood with complete strangers praying such a powerful prayer over me and Grayson and for Justin and Debbie. I cried so hard after closing the door to my room. I was scared and all I could do was cry out to God to just hold me in his arms and grant me the peace that surpasses all understanding. Grayson finally fell asleep and I got to work packing up our hotel room so that I could get moved to the new hotel the next morning. I had called to ensure I could get a parking pass when I got there in the morning even though check-in wasn’t until late that afternoon.
My phone rang at about 9:30 with a Rochester number, my heart skipped a beat praying it wasn’t the ICU calling to tell me something had happened to Justin. As I hesitantly answered the phone it was the PA for the plastic surgery team. The doctor on the other side of the line apologized for not making it to the ICU to meet me before I had left for the night. He went on to explain that they would be doing what is called an omentum flap the next day. Essentially they take the belly fat apron that is around Justin’s torso and bring it up to his chest to fill in the dead space around the outside of the heart. There is a great blood flow on the inside of the new valve, but not really any blood flow to the outside of the heart. Since there is no blood flow there isn’t a really great way for the antibiotics to be delivered to the outside of the heart valve. By doing the omentum flap it would create a new cleaning system on the outside of the heart, as well as put a little more protection around his heart now that the sternum was no longer there.
After that, they would probably wait a day or two before going back in and performing a pectoral flap. In a pectoral flap surgery, they lift the pectoral muscles up and bring them together across the chest creating one big muscle. After explaining the surgeries to me he asked me to give consent for the surgeries. At this point, Justin was still completely sedated and had no idea what had happened or that he was now without a sternum. Having to give consent for something like that was so hard. I gave consent over the phone and finished up packing before crawling into bed next to Grayson who was sleeping so peacefully. I knew I wouldn’t be getting much sleep that night. All I wanted was to be in bed at home in my husband’s arms listening to the rhythmic ticking of his heart valve. I scooped up my sleeping baby and just held him in my arms to avoid the empty feeling I had inside.