Finding my Faith in the Midst of Uncertainty - Part 4 - Chelsy Weisz

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Hello! I' wedding photographer and educator in western North Dakota.  I am so thrilled to see you here on the blog!  Grab some coffee and dig into some wedding planning tips, business hacks, our farmhouse renovations, as well as  some behind the scenes at #chelsywieszphotography

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Finding my Faith in the Midst of Uncertainty – Part 4

You can read part one here, part two here, or part three here.

The Mayo Clinic, Rochester, MN

This was the first time I had ever been to Mayo Clinic.  The buildings were huge, full of so many stories. Doctors and interns everywhere. Volunteers in bright blue vests ready to assist you in finding your next appointment, or where to get lunch. We headed to his first appointment an echo.  We were told to expect this one to be longer than any other ones we had done before.  They like to cover their bases at Mayo, and exam everything, and get a lot of photos.

Justin before they started his first echo at Mayo Clinic.

There was an echo tech, and an intern helping her. We told them about the recent surgery, and how we were hoping that doctors here would be able to plug the hole or do some type of scope surgery. About 15 minutes into the echo a doctor in a white lab coat came into the echo room. She looked worried and watched as they finished the last few photos of Justin’s heart.  I knew something was really wrong the moment she walked in the door. She had been watching his scans come in on a computer across the hall.

We finished the last 30 minutes of the echo in silence.  No more joking around with the techs.  The intern who was assisting was moved to the back of the room and the echo technician took over in silence, as the doctor directed her for further imagery of Justin’s heart. As they finished up the echo the doctor turned to us and said I know you were thinking we may be able to plug the leak but this is bad. The valve is dehisted again, this is going to be another very large surgery. We are admitting you to the hospital. We need you to go downstairs and get on one of the patient busses and go straight to Saint Mary’s Hospital. They will be waiting for you.

I’ll never forget the look on Justin’s mom’s face as we walked out of the echo room 30 minutes earlier than expected followed by a doctor.  Debbie was reading a book as Skyler sprawled across a waiting room chair next to her.  Debbie looked up from her book over her reading glasses and I watched the blood drain from her face as we walked closer to her, with a doctor behind us. I’m sure I was a sight. Pregnancy can make you cry at a drop of a hat while watching a commercial on TV.  I had just sat in silence watching Justin’s heartbeat flicker in black and white on a computer monitor for the last 45 minutes as tears rolled down my face.

Saint Mary’s Hospital 

We headed downtown on a blue patient bus that really needed to have its seats steam cleaned. The half-mile ride took forever as the bus weaved up and down side streets dropping off other patients at places like the Ronald McDonald house, and the Cancer Hope Lodge. 

When we finally pulled up to Saint Mary’s hospital we stepped off the bus and into a revolving door that blasted you with hot air as you left the chilly Minnesota winter and entered a green marble entryway full of people bundled up waiting for a ride. Some in wheelchairs some on crutches but everyone looking exhausted but thankful to be leaving the hospital.

Justin was admitted to the cardiac floor where he was certainly the youngest patient by 50 years. We stayed there on the 3rd floor of the domitilla wing for almost two weeks as we meet team after team of doctors.  We meet with infectious disease, cardiac surgeon, dietitians, physical therapy, respiratory. Mayo definitely has a prestige about it. All the doctors are in suits and ties. Nurses are all in the same navy colored scrubs, and they have teams for everything. Need an IV started there is a team for that, something not working right with the telemeter heart monitor, there is a team for that. Lab techs have maroon scrubs and they come every 4 to 6 hours.

Justin was on a 24/7 heart monitor, and couldn’t leave the third floor of that hall. He had to shower with the heart monitor on. The sticky patches were leaving swollen red marks all over his chest. He was finally down to using the micro sticky pads that they use in the NICU because he was having such a bad reaction to the adhesive on the regular pads.

After a few days into Justin’s stay in the hospital, Debbie and I moved to a hotel just across the street. Though it was a bit more expensive it meant we could stay longer since we wouldn’t need to catch a bus to hotel. This also meant we could come and go as we needed. If Sky needed to go back to the hotel for a nap I could just run across the street with her. One thing that was a bit crazy was all the basketball and hockey teams that were staying at our hotel. It was state basketball and the tournament was in Rochester. We almost had to move hotels since the teams had booked so many rooms in advance, but there was a last minute cancelation and we got to stay.

They did a lot of testing those next two weeks CT scans, x rays, blood work, they even sent Justin downtown to the cancer center to do a pet scan. His inflammatory markers were high, his white blood count was high, but was it an infection, or was that just because of post-surgery. After the pet scan, they were confident it was an infection again. The entire area around his heart was glowing on the scan indicating the infection was active.

After almost a week and a half, we were granted a Day Pass! Justin would finally be allowed to leave the 3rd floor. We would get to explore the hospital, but we would be accompanied by a nurse, with a very large backpack. As we walked along the hall talking to our nurse pushing Justin’s IV pole she explained it was a jump pack in the backpack. She was monitoring his heart as we went and if something happened she had everything in her bag to resuscitate him if needed. I think that was when the sevarity of the situation really hit me.

My Doctor Appointment at Mayo Clinic

While we were in that waiting period I was on the phone a lot. I talked to my best friend Morgan almost every day. It was nice to be able to verbally process things to someone outside of the situation for a change. I also had to call and reschedule some of my own doctor appointments. I was nearing my due date and was supposed to have another ultrasound with neonatal medicine. I was not going to make it back for that and wasn’t 100% sure we wouldn’t leave Rochester without a new baby too. I was starting to have more and more braxton hicks contractions, though my doctor at home was really the only one I told.

My OBGYN set me up with an appointment in Rochester. I had to go downtown and meet with a doctor. I explained my situation and they did an ultrasound. She explained to me that if I did go into labor I would have to deliver at a different hospital then the one Justin was in. That got me pretty nervous, the thought that if I did have this baby in Rochester there was a very large chance that Justin would not be there, that I would be on my own. I did everything I could to not push things too hard. I stayed off my feet during the day. It was at night when the contractions would get the worst. I would get back to the hotel from the hospital and take a nice long hot shower or bath.

Last pregnant bathroom selfie!

So Many Names and Faces

Justin’s board with questions. Notice the sheet with names and photos on the bottom left!

We met so many doctors and teams it was tough to keep them all straight. A nurse actually printed off a sheet of paper with every doctor’s name, field, and photo so we could keep everyone straight. I had never been so happy to have an iPad and headphones for Skyler. I usually try to limit screen time but trying to keep a 4-year-old entertained in a hospital room was getting hard after the first week. That iPad was the only way we were able to listen to everything the doctors were explaining to us.

Jusint and Skyler playing in the hospital room waiting for test results.

Of all the doctors we met during our time at Mayo there were three that really stood out to us. The first was Dr. L. He was actually interning from Belgium and was on the Infectious Disease Team. He was always one of the very first to check on Justin during rounds and was one of the only people we saw every single day we were there. Justin was his first case at Mayo during his internship, and he was so down to earth and really seemed excited and interested in being there. The next doctor who stood out wasn’t directly on Justin’s case very long, but we loved Dr. W. He was the only doctor who talked to Skyler the entire time we were there. He just seemed like the fun grandpa type of guy. He would stop everything right away and ask Skyler how she was doing and show her what fun crazy socks he had on that day. He was also on the Infectious Disease Team but was going off of shift as we were getting to Mayo.

Skyler playing doctor with gloves and a mask!

The final notable Doctor we had was Dr. P. This would be Justin’s primary cardiac surgeon. A bald Italian man who was confident in his abilities, but wanted you to fully understand the magnitude of the situation and the risks involved. He definitely was one who would rather be in the surgical suit then working on his bedside manners, but he was the best of the best. We only met him once before the surgery. He was confident in the surgery, but was very black and white about risks.

This would be Justin’s longest surgeries. They would be replacing the valve and graff from the previous surgeries, but they would also be reconstructing his aortic root and arch. The valve from December was too small and wasn’t getting enough blood through to the heart quick enough and was creating a pressure gradient that was too large. It was essentially blowing itself out.

By this point, it was the night before surgery was scheduled. Erin and Andrew, Justin’s sister and her fiance drove down to be there when he was in surgery. Debbie, Erin, Andrew, and Skyler said goodnight and headed back to the hotel. I stayed with Justin a bit later. We were both nervous about the surgery. He was starting to go through the thing where he would tell me if anything goes wrong and he doesn’t make it out who I needed to contact at his work and what accounts are where. He had been through this just two months ago in Fargo the night before that surgery. I remember grabbing his hands sitting in a chair across from him and just saying “It’s going to be okay’ We are going to make it home all of us before this baby comes.” The next thing he said shook me to my core.

We hadn’t picked out a baby name yet. We had a list going but had kinda thought we would wait until he was born to really pick the right name. Justin looked at me with tears in his eyes and said, “But, just in case I don’t make it through this I like the name, Grayson Briggs Weisz.” I told him I loved that name too, but he was going to have to make it through this surgery and be there when we named him. Justin was not allowed to leave me with two kids to raise on my own. We both wiped away tears before we said a silent prayer and I headed across the street to cry in the shower.

The next morning was surgery day Justin was bumped to the second case last minute.  A kid came in with a severed hand and needed the operating room first. We spent the morning in his hospital room waiting.  They came in a glued all these wires to his head so they could monitor his brain activity while they cooled his body down for the surgery. When it was finally time for his surgery we headed over to the ICU waiting room.  

Skyler and Justin with his head wired up for surgery, to monitor his brain waves.

ICU

The ICU waiting room is one of the largest waiting rooms in Saint Mary’s Hospital. Each department has it’s own floor and waiting room. My favorite thing about that waiting room is the wall of windows that face to the west overlooking the main entrance to the hospital.  The mornings of in the ICU waiting room are the busiest.  All of the families waiting for loved ones in day surgery that have any cardiac-related issues wait in the cardiac ICU waiting room just in case something goes wrong.  As those day surgery cases finish up the cardiac ICU waiting room clears out leaving families with loved ones in the ICU. 

Since Justin’s surgery got started later and was expected to be a long surgery, to begin with, we spent almost the entire day in that waiting room. We did some insanely challenging puzzles to pass the time. The kind with a million pieces all the same color! We toured the hospital, visited the chapel and the library.  Skyler made a valentines day card at the crafts area in the library. We ordered in Chinese food that night.  The sunset and we were the last ones in the waiting room.

Erin and Skyler hanging out in the ICU waiting room.

11 hours after he was rolled into surgery Justin’s surgeon walked into the empty waiting room looking exhausted.  He was still in scrubs, and looked like all he wanted to do was go to bed. I hardly recognized him the surgery seemed to have aged him almost 20 years.  He explained that surgery had gone well, but it was one of the most extensive surgeries he had ever done. They had replaced the valve, the aortic root and the arch of his valve.  The last valve was rocking around so much with each heartbeat that it had torn so much tissue it was like a meat grinder had gone through Justin’s chest.

Skyler zonked out in the ICU waiting room.

He told us that Justin was still in the operating room at the moment. They were still working on closing him up. There was actually a possibility that they wouldn’t close his chest that night. By leaving his chest open the swelling would have time to go down, and if there was any bleeding they would be able to get in quicker to stop it.

We sat in the waiting room another hour before a younger surgeon came in with a very worried look on his face. When he finally stammered out that they were not able to close his chest and choose to keep it open I wanted to both hug him and slap him at the same time.  I’m not sure if it was one of the first times he had spoken with the family of a patient before but it was rough.  After he left Debbie turned to me and said: “the way he was walking up to us and started talking I thought for sure something else had happened and Justin was lying dead in an operating room somewhere in the basement of Saint Mary’s Hospital.” Luckily that was not the case and Justin would be heading up to the ICU shortly.

Click here for part 5!



I'm chelsy

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I'm Chelsy a small town farmwife from western North Dakota. I built an elegant wedding photography business in the middle of nowhere with nothing but a camera and a google search bar. When my husband's one heart surgery turned in to a three-year-long battle, it turned everything on its head. I vowed to help other small business owners put systems into place to ensure the business can still run even if you have to step away.

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  1. Kenneth G. Dean says:

    Another interesting chapter! You are a very good writer. I imagine your writing it down is theraputic. Think how much your children will appreciate this in years to come. I hope Justin has fully recovered from his bought with pneumonia. I look forward to the next chapter. Grandpa
    .

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