The next morning presented some challenges. I had to get all our bags loaded into the pickup with a baby by myself. I looked pretty funny pushing Grayson in the stroller while dragging the luggage cart full of bags down the hall before the sun was even up. I finally got it all loaded up and headed to the new hotel. It was freezing outside! Luckily I found a parking spot large enough for the F250 long box, the downside it was at the far end of the parking lot and there was no way I was going to get the stroller across the snow and ice packed parking lot. The wind was blowing. Somehow I muscled through and carried 20 pound Grayson in one arm, the folded stroller in the other and the diaper backpack strapped to my back. The most incredible part of that sprint across the parking lot and the busy road was that I somehow managed to not slip and fall!
Once we got inside and got the stroller set up we started the half-mile walk across the hospital to the cardiac ICU floor. Justin would be going into surgery shortly and I wanted to be there before they got started. Debbie’s train had been delayed some but was scheduled to arrive at the hotel around noon. After I said goodbye to Justin as they took him down to the OR I headed to the cafeteria to get some breakfast before heading to the ICU waiting room. When I got to the waiting room the K Family was there again, this time there was a few more family members here to visit with Madi now that she was more awake following her surgery the day before. I spent most of the morning chatting with them and trying to contain Grayson to the waiting room. The little guy was pretty determined to crawl into an elevator as if his life depended on it!
Pushing Grayson around in his stroller was actually pretty entertaining. Almost everyone we passed smiled down at him and he seemed to bring a ray of warm bright sunshine into the dated florescent hallways of the hospital. One of my favorite memories of his infectious smile happened that morning. We had gone down to another department that had a changing station in their bathroom. We were walking towards two doctors that seemed to be in a pretty intense conversation at the end of the hallway. As we neared them one of the doctors looked up to see Grayson coming at him in his stroller. That doctors face lit up and he started making the goofiest faces at Grayson. Grayson was thrilled with the attention and squealed with excitement which only made the second doctor join in with the silly faces. If there was ever a time I wish I had a go pro strapped to the top of that stroller it was then!
That afternoon Debbie arrived at the hospital while Justin was still in surgery. We spend the afternoon in the waiting room staring out across the road watching construction workers unload supplies for the new houses being built. We finally got a call from the surgical nurse letting us know that the surgery was finishing up. We made our way back to the ICU to meet with the plastics team. They said the surgery had gone great. They wanted to wait a day before going in and performing the pectoral procedure. Justin’s room had an annex room attached to it which worked out perfect to keep the stroller parked in the doorway between the two rooms. The rhythmic hum of the heart monitors and oxygen tanks actually lulls a baby to sleep pretty well! We sat there in Justin’s room well into the evening before heading across the street to check into the room and get bags moved in from the pickup, I was so thankful to have another hand there to help with Grayson! We got moved in and I got Grayson put down to sleep. Debbie and I sat up on the fold out couch talking. We talked a lot that night about hopes and fears, God and Justin. It was well past 3 am by the time we looked at a clock.
The next morning we grabbed breakfast at the hotel before heading to the hospital. We spend the day in and out of the ICU. They were keeping Justin pretty sedated. They didn’t want to wake him up and need to remove his breathing tube before the pectoral flap was there to protect his heart. Mayo Clinic only does a handful of pectoral flaps a year, and only about 2-3 omentum flaps a year. This isn’t something that the ICU nurses deal with very often so all of them seemed to be a little on edge. Justin also did not have a central line in. For major surgeries, patients usually have a swan neck central line in their neck area. Since Justin’s first surgery was not expected to be a major surgery they did not place one then. Because Justin was at such a risk of infection they never did place a central line.
That evening they decided to try and wake him up a bit just to check on brain activity and motor skills. Debbie and I stood by his bed in the dimly lit room as his nurse Craighton, turned down the sedation and we waited for Justin to wake up. Justin had been asleep for two surgeries in two days, with no idea what had been happening. His eyes fluttered open a few minutes later. Poor guy was so confused. He wasn’t supposed to wake up in the ICU and seeing his mom standing by his bed must have set off some alarms. We explained everything that had happened in the last few days, and his eyes grew wider as we continued. He still had a breathing tube so was unable to ask questions. He started raising his right hand and Creighton started to get worried that Justin was going to start pulling out the breathing tube. I asked Justin if he wanted a pen and he shook his head yes. And we rounded up pencil and paper.
We propped him up with some pillows. The frustration flooded his face as he squinted at the paper. It seemed to take every ounce of concentration to hold the pencil. His hand was moving but the pencil wasn’t even touching the paper. Sitting down with him as I wright this I asked him what he remembers from that. He said he was scared, and couldn’t see anything. Everything was blurry and he was frustrated that the scribbles were not making sense to anyone. I had asked him to take a breath and try to feel the pencil as it made contact with the paper and he scribbled out ‘thank mom’ before he drifted off to sleep again. A little while later he woke up again and motioned for the paper. This time he wrote ‘i ‘heart’ you’. That brought on some tears for both of us.
After he fell asleep again I headed out to the bathroom. When I came back still on a high of seeing him write his little love note I rounded the corner of the room to see Debbie sitting next to Justin. Seeing me she almost jumped out of her skin and I could see the blood drain out of her face. I felt my stomach drop in that second before realizing that the room was still quiet and no one was running to get a crash cart so obviously Justin was still okay. Debbie seemed flustered as she tried to make small talk, maybe she was just tired it had been a long few days. A few days later she shared with me that Justin had written another note while I was in the bathroom. This time he was asking his mom if he was dying. She had ripped the page out of the notebook to keep me from seeing it. As much as you want to keep hope and faith in God, we don’t know his plan, we are only human, was this a foreshadowing of something ahead?
The next morning Justin headed to the operating room around 11:30 am. Surgery got done about 3 pm. Erin and Andrew made their way down to Rochester once again to keep us company in the waiting room. Justin’s breathing tube was taken out about 6 pm that evening and he was transferred to the step-down unit the next afternoon. Since there were just stitches holding his pectoral flap together it was extremely important that Justin kept his arms close to his body. They rigged up two shoulder immobilizers basically making him look like a Trex. This was pretty frustrating for him. He wouldn’t be able to really move his arms for almost 6 weeks.
This also presented us with some challenges, like getting dressed, and washing his hair. We got some extra larger shirts and practiced with occupational therapies on getting dressed. Physical therapy worked with us on getting in and out of the pickup without using his arms. They actually have a simulated car on a lower floor that we practiced on before discharged.
I had to go to Home Depot and look for a step stool that was wide enough, and tall enough for Justin to stand on and turn around on in order to sit into the pickup seat. I must have looked pretty distraught as I headed to checkout with the chosen stool late at night in a mostly empty Home Depot. The sales associate asked how I was doing, I must not have been very convincing when I said okay. He looked down at the stool and said he couldn’t believe how dirty and scuffed up it was, he was going to discount it for me. Honestly, it was probably me who had gotten it dirty. I had set it out on the floor and practiced stepping onto it without using my hands for balance and then spun around on it. I bet whoever was watching me on the security cameras thought I was straight up losing my mind! I got back into the pickup and just cried. God knew I needed a kind soul that evening!
We left Rochester on February 4th, 2018. This was kind of a bad day to be heading into the Twin Cities, it was Super Bowl Sunday in Minneapolis MN! We decided to completely avoid the cities and took the most complicated route ever around. Debbie and I joked that if we had actually had to print off these directions on mapquest the stack of paper would be 4 inches thick. One of the perks however was we got to see a lot more of MN than we ever had before.
We rolled into Fargo that evening and stopped by the pharmacy to pick up Justin’s new IV antibiotics from Chip. We stayed the night in Fargo before heading the rest of the way home in the morning. The next six weeks were a blur, filled with weekly trips to the clinic for blood draws, and picc line dressing changes. Since Justin couldn’t move his arms away from his body his picc line was placed in his neck. The one advantage to this was it was easier to tape up for the shower and meant less hair being pulled out when removing the shower covering.
At the end of six weeks, we headed back to Rochester for some checkups with infectious disease and plastic surgery. This was actually one of the first times Justin met the plastic surgery team who had done the specialized flaps. They took the time to explain to him what exactly they had done, and how the surgery had gone. Though we had explained it to him before I think this is when it actually made sense to him! The incision looked good, and they removed the sutures, before sending us on to infectious disease.
For some reason, his ID appointment kept getting pushed back as we waited in the waiting room. We joke now that we sat there so long Grayson learned how to walk. Yep, Grayson learned how to crawl and then took his first steps in a waiting room at the Mayo Clinic! We finally got in to see his doctor. His blood work looked good and they determined that he could stop antibiotics and get his picc line removed.
We got his picc line removed and finally hit the road for Fargo that evening! He wouldn’t be released to go back to work until the beginning of June. In the meantime, he searched for a protective vest he could wear whenever he helped out with working cows. He found one originally designed for motocross. The lack of a sternum was a pretty scary concept right away. While the reality that a blow to the chest from an airbag or even whiplash from a seatbelt could have devastating consequences a year and a half later it hasn’t really affected life as much as we thought. While Justin will probably never get to go skiing or snowboarding, it’s not the end of the world. In fact, I took him snowboarding once when we were dating and had to promise if I wanted to continue to keep dating to never ask him to go sliding down a mountain on any type of board strapped to his feet again. I think one of Justin’s least favorite parts of not having a sternum is sneezing. He says each time he sneezes he feels like his chest is going to blow out! Luckily he’s not allergic to anything that causes him to sneeze uncontrollably.
I’m happy to report Justin made it a full 365 days out of the hospital! He was admitted back into the hospital on February 5th, 2019 for pneumonia. Luckily we only spent one night in the hospital, but I did write a few of these blog posts from the side of his bed in the Emergency Room.
Throughout this entire journey, I have been completely in awe of how perfectly God’s plan was laid out for us. So many times we ended up in just the right spot in just the right time to meet with just the right care teams. As I have shared our story online I started to see something I had never thought would be a possibility. Our story of how God was working in our lives was starting to have a ripple effect on other peoples lives too. I got messages from people across the country who were following our story and praying for our family. They shared how my faith was strengthening their own faith.
I have gone on to speak at churches and church groups. This was a big hard and challenging season in our lives but so much good has come out of it. My faith and relationship with God have become deeper than I ever thought was possible. Our marriage has grown and strengthened so much in the past three years. My appreciation for my friends and family has become stronger. This story has given me a platform to share Gods love and faithfulness even when the storms of life are more than I can manage on my own. I am not a strong woman, wife or mom. Not on my own, only through Christ was I able to continue to move forward day after day, surgery after surgery, sleepless night after sleepless night.
I want to leave you with a song that carried me through some of the darkest hardest moments.
If this story has touched your heart I would love to hear from you! Thank you for taking the time to read our story.