One Day.

I was a perfectly normal 21-year-old in nursing school, or so I thought, but in April of 2024, I noticed my health started to decline, I couldn’t workout anymore. On Friday, April 12th, I was headed to take a nursing exam. I lost consciousness for five minutes after walking from my apartment to my car. Mind you this walk was less than a block. I woke up on the ground of the parking lot. After my nursing exam, I drove to Urgent Care where they expedited a cardiology appointment for the next week. I then thought it was a good idea to drive home to be with my family. While working at Sanford the next day I had another syncopal episode. This is where my journey really starts being admitted to the hospital on April 13th. 

Sanford Internal Medicine and Cardiology had a running diagnosis of Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and/or acute on chronic pulmonary emboli. In addition, a transthoracic echocardiogram was completed and diagnosed me with right ventricular heart failure secondary to the pulmonary emboli in my lungs. I was transported by ambulance to Mayo Clinic on April 17th and admitted to the heart failure service. This is when physicians brought up the idea of a Pulmonary Thromboendarterectomy (PTE), an 8–10-hour surgery that involves opening the chest and attaching me to a heart-lung bypass machine, then cooling my body to about 64 degrees Fahrenheit. During critical parts, the surgeons turn off the heart-lung machine, stopping all circulation for 20 minutes, to create a bloodless surgical field. Then they open the arteries blocked by chronic clots and scar tissue. They repeat the on-off process with the heart-lung bypass machine until all the obstructing material is removed. This was sidelined until August, as I was too unstable and the risk of me surviving the surgery was low. During the rest of my time at Mayo, I went through many different tests such as: thrombophilia workup, genetic workup, CT scans, full body ultrasound, and more. CTA of my chest demonstrated pulmonary thromboembolic involving all 5 lobes with evidence of pulmonary infarcts and RV strain. At this point I was started on a medication known as Riociguat, that was developed just 3 years ago, for my CTEPH, Digoxin for my Heart Failure, and Lovenox to prevent new clots from forming. I was discharged from Mayo on April 25th.

Fast forward to August, the PTE surgery was scheduled for 8am on 08/09/24. My family and I woke up that morning feeling pretty good. Of course, there were plenty of nerves for this type of surgery, but we were all positive about the outcome. The PTE surgery is one of the only cures for CTEPH. The last memory I really have is getting wheeled over to the OR that day, transferred to the surgical table, and the anesthesiologist confirming they were going to intubate me. Please count back from 10. 

Let’s fill in the gaps in the point of view of Casey, his mother, as Ryder was not conscious enough to remember anything. Starting with the events that happened on 08/09/24:  the surgeon successfully opened Ryder’s chest and started the procedure. He was cooled to 64 degrees and tolerated the procedure well. Dr. V was able to get all the large blood clots out and his pulmonary pressure came down about 15mmHg, which Dr. V was hoping to lower it more; however, Ryder’s heart was 2x the normal size. After getting him off bypass, they had to defibrillate Ryder, the team only needed to do it once and they got him back to normal sinus rhythm. When Dr. V called Travis (Ryder’s father) and I down prior to the close of surgery to tell us how everything went, he just kept saying how shocked he was about the state of Ryder’s heart. They had taken so many images of it, but opening his chest and seeing it in person was something else. He remained positive that there could be some improvement in pressures over the next few days, but I had that gut feeling you get as a parent. Travis and I just couldn’t seem to shake his comments on the state of Ryder’s heart.

The two days immediately following the first surgery were difficult for Ryder, his oxygen needs continued to increase after extubation. As his lungs needed extra support, so did his heart. He was started on many medications to balance these issues. The ICU team started to discuss re-intubating him and/or starting him on ECMO. While Travis and I always knew just from research ECMO was a real possibility, we were all really hoping to avoid hearing that word.

On August 12th, Ryder had some small wins today…He let Travis and I sit in the room for 5 hours. He sat in the chair twice today. He is finally feeling cold…this is music to the rest of us because his room is like a walk-in freezer. And my personal favorite…imagine needing a dry erase board and marker to communicate followed by seeing your dad and you just want to say hi! Your dad, who is not wearing his glasses, thinks you wrote “hit”. Ryder writes “I just wanted to say hi! but now I do want to hit you.” The medical team continues to work to find the right balance between the needs of the heart and lungs. Today brought in a fresh set of eyes who will be with us for the next 6 days now. I love the approach of let's try to set small goals, do small tweaks, and adjust from there. It seemed the new team wanted to try a few more things prior to intubation or going the ECMO route.

August 13th, a Tuesday Travis and I will never forget. Who would have thought one would ever have to understand how big of a step it was to get from a CPAP mask to a high flow cannula…not me. We went from thinking we were moving forward on Tuesday and even had a beer late that night at the hotel to celebrate the small win. When Travis and I woke up and got to the hospital the next morning, it was a totally different story. The days turned awful for a good number of reasons, but simply put, on August 15th the decision was made by all the doctors and surgeons on Ryder’s case that he needed to be taken in for surgery again. In medicine or not, you know going back in so soon there are increased risks. What I will say about Mayo is they heavily weigh the risk versus reward. When the risk outweighs, you feel it in your bones the way they look at you, the way they squeeze your hand, the way that you didn't even realize they were tracking his chart and suddenly appear behind you. The surgeons removed 300 mL of clots and blood around his heart and tried to dry out his open areas from the prior surgery. The plan is to keep him intubated for the next couple of days so he can rest and let the machines work for him. They will wake him every 4 hours for neuro checks, which I agree are so necessary, but you can tell are painful for him.

The night of Friday August 16th was a tough night for Ryder, he had some big setbacks. Between having to go up on vent settings to solely breathe for him, to his hemoglobin continuing to drop requiring more blood transfusions, to finally words like ECMO were becoming a harsh reality. Again, we read about it and discussed it being a possibility prior to the surgery, we just did not think it was our path. It hit hard. The doctors/surgeons spoke back and forth throughout the day and decided to hold off on it if they could get some labs under control. There was not another big setback throughout the day, so we waited. Friday night was the first good night he has had in the ICU since Monday, and we are so thankful. The feeling of letting out a big breath getting a report from the nurse at 6:30am Saturday morning was a great feeling. Plan for today: maintain blood pressure without medication. Maintain hemoglobin without blood transfusions. Tolerate coming down in the vent setting to breathe more on his own. Ultrasound scans of legs, liver, and upper extremities show no new clots. Temperature holds and does not get any higher - he has a borderline fever. Maintain therapeutic heparin levels without causing bleeding. CT scan will take place if he stays stable or if they find something on the ultrasound. ECMO is still on the table, but with his changes in the right direction today, it is on hold. No plans to extubate him with current ventilator settings however they might try a “sedation vacation" later today. I only love this because Travis and I get to see his big, beautiful eyes, he squeezes our hands and shows us his sassy personality.

Heartache is defined as emotional anguish or grief. For me, that is August 19th…crumbling into a thousand pieces on the floor of his room while my heart was ripped out of my chest watching our son wheeled down to the OR for the third time in less than 10 days. Ryder was placed on VA ECMO today. His body has been through so much and he just could not catch a break. Once in there, they found the right side of his heart was completely distended and his arterial blood was black. Ryder was in cardiogenic septic shock. The chances of his heart recovering with ECMO are slim to none. Travis and I thought that ECMO was rock bottom…and then we heard the word “transplant.” That leads me to the word selfish…because that is what it feels like to truly have to think about someone else’s loved one not making it so our sweet son can. I have tried so hard to stay strong throughout these last 4 months. Trust the doctors, you are going to the right place, and while all of that may still be true somewhere deep in our subconscious, today we are utterly broken. Tomorrow is Ryder’s birthday, and he will not be awake for it…

August 20th, his 22nd birthday. While it was nowhere near what Travis and I expected it to be and knew he wouldn’t remember it. We decorated his CVICU room anyway. Ryder is a big Taylor Swift fan, so his aunt bought a “feeling 22” sign. We couldn’t find red 22 balloons anywhere in Rochester, so some of my co-workers drove the balloons from Minneapolis/Fargo. Visitors came and went to wish him Happy Birthday. The nursing staff brought cupcakes and cards, which was beyond sweet. It is just hard to be happy when you are looking at your child on his birthday, and he can’t hear you wish him a Happy Birthday. 

August 21st was a wild day, Travis and I met with all the transplant specialists. The cardiac team, pulmonary team, social worker team, dietitian, pharmacy, and finally the nursing coordinators. Travis and I will not read a single book this year, it will only be pamphlets. Here is where we stand…Ryder has now received a sign off from all but one of the transplant team groups (I believe this should be in today as they saw him early this AM). Once this is complete, Ryder will be officially listed as a UNOS level 1 recipient for both a heart and double lung transplant. At 4:45PM we were told he was officially on the list. The doctors told us it could take 2 days or 2 weeks. One never knows when the organs matching might come up.

August 22nd Noah (Ryder’s 15-year-old brother) and I were on our way back up from the lab heading to Ryder’s room. Noah and I saw Travis was talking to Dr. Wong (cardiologists) just outside his room door. This alone is not a strange site, sometimes Ryder wants to sleep, and people talk outside. This time it was different though…suddenly one of the NP’s is hovering on an old portable phone and says I have the parents right here. Travis was closest so she handed the phone to him. Dr. Wong tried to keep talking to me and Noah, but we were way more interested in who Travis was talking to. Travis gives us a thumbs up. I said we have a donor?! And he nods his head yes. People just started flying out of the woodwork, Dr. V and Dr. Spencer appear out of thin air. Dr. Wong realized he missed a page. We were getting hit from every angle. I do not think it was sinking in, I mean we are talking about 16 hours of being on the list and we get a call. It just did not feel real. Travis and I accepted the donor organs on Ryder’s behalf. We were concerned with what is called a “dry run.” You see with transplants, there is a special procurement team that travels to obtain the organs on the surgeon's behalf. The surgeon makes the ultimate call once he sees the organs in person, not just on a video call. If they do not like what they see, they can call it off. As parents, we were extremely comfortable this was part of the process, such a huge relief that this is in place and discussed. It is also a piece of that emotional rollercoaster we are trying to protect ourselves from by sharing with everyone only to have to go back and say it was a dry run.

August 23rd around 9AM, we got the official text that the surgery has started…it is going to be a very long day. Conservative estimate is about 12 hours for the surgery.  The kiddo made it up to his room around 10pm, so we could see him for a few minutes. Ryder looked rough. I thought I was mentally prepared considering this was his 4th surgery in 2 weeks, but I was not…The good news is the heart is working well. The surgeon was incredibly happy with this organ. The lungs needed some added support, so they moved him from VA ECMO to VV ECMO. The lungs have seen a lot of action these past couple of weeks and hoping this new set just needs to settle in a couple of days and they will be working as good as the heart. The blood is where he is needing help…it is not cooperating the way it should. His blood is thin and oozing from his 6 chest tubes. There needs to be a balance thickening the blood while not getting it too thick where it is forming clots. This is what will land him back in the operating room, so I am really praying they figure out the balancing act here. The plan for the evening is a neuro check, loads of labs, and keeping the poor kid’s pain managed. 

At 12:36AM on the 24th, we received a call from the ICU telling us they were rushing Ryder down to emergency surgery. He was bleeding and they could not slow the output coming out of his drains. Ryder lost 3,000 ml of blood (over half of his blood volume) … I was a mess. No one could tell us exactly what was going on, the text messaging system that was working so well with his surgery just hours ago was failing us now. I realize all of it was just telling us what I couldn’t get out of my head, that he was so critical the team didn’t have time to text us. They were trying to save his life. It was a crippling feeling not knowing anything about what might be happening, calling the nurses station every 30 minutes (Travis told me every 15 was too much) to ask for updates. All I really wanted was any person to tell me was that he was alive. The call from the surgeon did not come until 5:18AM. The surgeon made the decision to leave Ryder’s chest open as when he originally closed it Ryder started to bleed again. This way if it does not clot off on his own, they do not have to keep opening his chest. The surgeon was equally as frustrated as we still do not know where the source is, and he apologized for the sleepless night. At the end of the day, the best decision was still made for Ryder, so the rest did not matter. Ryder’s room was intense, overwhelming really throughout the day. He is still clinging to his #1 status of being the sickest patient in the CVICU. Everything looks different in there now as there are always a minimum of 2 nurses and 1 ECMO specialist in the room. You must wear masks to enter the room now and honestly, you just feel like you are in the way. There is just so much going on. We tried to check in each hour. The more they rotated him, the more blood came out of the drain. The more blood that came out, the more they needed to transfuse. It was just a cycle on repeat. A cycle I knew would land him back in the operating room at some point. 

Upon arrival at the hospital the morning of the 25th, there was official news, Ryder was heading back down to the OR at 8AM for exploratory surgery. The surgeons needed to find the bleeder. The heart is still working well, the lungs are doing good, the kidneys are happy with the dialysis (oh yes, this happened too, his kidneys took a hit…a big one, with so many things going wrong I missed reporting they put him on CRRT dialysis during one of the 3 surgeries in the last 24 hours), the bleeding needs to get under control. Frankly, this kid deserves a break. He deserves to know what day it is. He deserves to start feeling better...

The field was dry! The surgeon was downright giddy. I have never heard someone that happy. There was a small oozing from the fat on the right transplant lung. He thinks that was the source. He then followed it up by calling himself a “chicken” and not removing the ECMO because he does not like to do things too quickly. He will remove ECMO in 48 hours if all continues to go well. They were going to extubate him today, but the CVICU doctor also wants to play it cautious and not go too fast. He said he does not want Ryder to get pneumonia from pulling the tube out too quickly in case something would transfer. Travis and I momentarily breathed a sigh of relief, went to get more coffee, and took a seat in the waiting room just outside his unit. Apparently, that was short lived, when Travis and I physically jumped at the sight of the CVICU doctors exiting the unit door.  They walked over to us with their hands up and quickly said “everything is fine, we are just going to get a diet coke.” We couldn’t help but shake our heads and laugh. Our nerves were completely shot.  

August 27th: Slow and steady wins the race…it is a new mantra of sorts around here. Ryder has had a few “big” days…1.) He no longer has a breathing tube. It is so wonderful to hear his voice. 2.) PT/OT/RT are impressed he has been able to stand and do some exercises the past 2 days. 3.) We have found steroids have a big effect on him. Thankfully today is the last big dose of them and then they can start titrating that down considerably tomorrow. Sleep should be in everyone’s future starting tomorrow! 4.) They have officially “turned off” the ECMO machine. The dialysis will need to stay in place for a few more days. If they can remove the ECMO lines tomorrow, he will get a new port for dialysis. Unfortunately, both must be done with anesthesia, and he will have to be intubated again… 5.) Biggest news of today is that he passed his swallow test this afternoon! I’m not sure who is happier, him or me, he has been asking for water and ice chips for 2 days straight. The ICU delirium is slowly getting better. The nurses have dubbed him the most pleasantly confused patient they have ever worked with.  I am not sure we were prepared for what this was, but frankly after all he has been through to wake up and just be so sweet, kind, and innocent as he is being is such a relief considering how the last few weeks have gone for him.

August 29th…FOR THE FIRST TIME IN 20 DAYS, HE IS WALKING!!!

Over the next week he continued to make strides! 1.) All but 1 chest tube…GONE! 2.) Hello, walking my old friend…he is cruising with that walker now! 3.) Goodbye Oxygen! 4.) Goodbye dialysis! 5.) Goodbye feeding tube! 6.) Hello, fresh air! He loves going to the courtyard to enjoy the sunshine. 7.) Graduated from the CVICU to the CVPCU! Only 80 more days to go before we can all call Fargo home again.

September 1st-September 8th: The next week, progress was a word that means different things to different people I suppose. The beginning of the week seemed to stick with our mantra of slow and steady wins the race. PT (both regular and Pulmonary) were going well, OT was good, and kidneys were making a phenomenal recovery.  Shocking as it would seem, discharge to a hotel in Rochester by the end of the week was sounding like a real possibility. The last couple of days have looked slightly different. Yesterday September 6th, Ryder had to go to Interventional Radiology to have a pigtail (drain) placed on the right side of his chest. They drained 750 mL of an amber colored fluid from it. He felt defeated. To try to cheer him up, his grandpa and Dad went to get him a chocolate caramel shake from the Red Cow and Chicken Alfredo from the Canadian Honker. He loved it. Unfortunately, it was a little too rich for him all at once and he got sick the next morning. While we continue to wait to see what the fluid comes back as, the team has put him on two different antibiotics and let him know he will be going back to Interventional Radiology for them to place a pigtail on his left side as well.

The following week was honestly the week we were all waiting for since entering the hospital on August 9th. On September 13th, the in-patient hospital journey ended; however, the journey of recovery outside in the real world has just begun. 35 days in the hospital. 22 days in the ICU. 13 days in the PCU. 14 IV lines. 8 surgeries. 8 chest tubes. VA ECMO. VV ECMO. 2 new lungs. 1 new heart. 1 generous family that saved his life.