Yes, John, You Are Special! - July 4 & 5, 2022

The past 2 days certainly proved John's mother, Julia, right. For 34 years I have heard him talk about how the sun rose and set behind Johnny Churan, if nowhere than in his mother's eyes. How he was a "miracle baby" and he was a perfect child. :-) I've heard many of his older cousins who experienced his childhood confirm this.

Well, he is certainly proving at least that he was as "special" as he proclaims by getting celebrity-worthy attention at The Mayo. 

His fevers have been persistently bad the last few days as he is battling difficulty breathing, high volumes of fluid and a variety of unspecified problems. I had spent most of the weekend sleeping in the recliner in his room watching him progressively battle. 

I don't think anyone one other than maybe my grandfather who finally passed at 96 had a stronger will than my husband. John has been determined to keep fighting to get to the next treatment or next drug that will heal him or give him more time and a chance to live life, move into his new house, start rehabbing in his new pool, travel to see friends, anxiously see how good his Dayton Flyers will be this year and experience his boys having families of their own. 

The Mini-ICU

After Sunday's emergency bronchoscopy and fluid reduction, he had a clear evening as the fevers finally broke, the fluid was removed in and around his lungs and other than a bad cough and tired, he seemed on the right track again. We didn't have answers on this pneumonia that was developing, but he was feeling good and unaware of the procedure or details leading up to it. 

The 4th of July was a different story. The fireworks weren't in the sky for us, the were brewing in his room. 

As his fever started raging in the 101s-103s, the ice packs and cooling blanket went on, the A/C was cranked, the cool compresses on his head and the delirium, the cough got worse and through the Monday night, I kept alerting the nurse when I noticed changes in his breathing. By Tuesday morning he was seriously struggling with high blood pressures, heart rates, and shallow, rapid breathing, or as I've learned in my real-life training now, "respers" were in the 40s. and that isn't good. He was maxing out on Tylenol and they have been giving him daily dialysis to remove swelling in his face, legs, and most importantly chest.

The new team came on fresh from their holiday celebrations to tackle the day and immediately kicked into action. We had physicians, techs, therapists, nurses and support staff descend on his room just like a month ago:  Respiratory, Pulmonology, Nephrology, Hemotology, Nutrition, and ICU. They talked about ICU, but were trying to avoid it. Each time a team would leave some new piece of equipment would quickly be wheeled through the room or attached to the wall and the noise kept getting louder between experts conferring off to the side and the motors of these devices. I would have taken a photo just to show the equipment and flurry of people, but I don't want any photos of him in that situation. 

They had him on IVs for blood products because his fevers are just burning through anything his rebooted system is making. He is getting anti-virals, anti-fungals, antibiotics, now steroids, nutrition, various electrolytes and I've sort of lost track on some of the bags hanging. He has been bumped up to high-flo oxygen to help push air into his lungs to make it easier to breath while whatever foreign matter is consuming his lungs right now hasn't stopped (that still hasn't become clear yet.) There were breathing treatments. The Remote Video Monitor to watch his every move and alert nurses who can't be in the room every moment. Then there is the chiller blanket connected to a big, loud cold water cooler that pumps the temperature-regulated water through the baffles of his blanket to help bring the body temps down while he awaits the next dose of Tylenol. He hates this blanket, but if we can figure out a quiet more transportable option, I think we could sell one to every female over the age of 50. Oh, and don't forget dialysis to remove 3.5 more liters of fluid.

The door was constantly opening with his 2 nurses, respiratory techs to monitor the oxygen and breathing treatments, radiology in to scan various parts of his body, cleaning people to take care of the mess that comes with lots of medical flurry, an ICU nurse checking in hourly, the NP and Team Lead peaking in the window frequently to look for changes. 

By 4:00 things settled down, the fever broke, his vitals were normalizing and he looked like himself, a bit more alert and asking for a drink. By 5:00 he told me to wake him in an hour and we would watch TV. By7:00, he was awake enough to want to talk to the boys on the phone. By 8 he wanted to watch Chicago Med (like we hadn't had enough medical drama for the day). By 9:30 he told me he was tired, I could turn off the lights and go home but to send in his night nurse with his meds so she didn't disturb him later. Always the man in charge :-) 

The Silver Lining

When he wakes for brief moments or hours of awareness void of fever, he doesn't remember any of the difficult parts. He generally has to be reoriented a bit, he asks the highlights of the past day (or two) and then he is content to watch the next episode of "Castle" or "Great Pottery Showdown" until he dozes off or the next fever begins. 

For this, I am grateful.

Cherish the Little Things

The last couple days haven't been easy. John has been fighting fevers more and more. When he battles the high fevers, he generally isn't aware of the situation which is good in some ways, but cheats us in others. We lose the snarky remarks and sharp wit you can expect from him. We lose the guy who obsesses over his plan and schedule. We lose the guy who is consumed with his favorite sports teams and constantly scouring the internet for information on the latest UD recruit or discouraged that his Reds are clearly the worst team in baseball. As he comes off a high fever he may have a few minutes to a few hours to be aware, communicate, get up and walk before the next fever starts to consume his entire being.

The fortunate thing is he generally isn't in pain. 

They have been treating him with a variety of harsh broad-spectrum antibiotics because they haven't been able to pinpoint the source of the infection that is consuming him. Today as I was just running home to shower and grab a bite to eat the Mayo Clinic popped up on my CallerID. They had taken him to an extra dialysis treatment to remove fluid from his heart and lungs. It was a pulmonologist that hasn't been part of his care team. She explained that the chest CT from right before I left showed considerable inflammation and debris in his lungs that hadn't been there the two days before. This explained the increase in oxygen needs through the night and the shallow rapid breaths he had started having this morning. It also explained why he never had a single break from shivering and fevering from 5:30 p.m. until I left to come home at 10:00 a.m.

They felt they needed an answer within the hour to perform this procedure and get moving before the inflammation had done irreparable damage. I called the boys and rushed back to agree on his behalf. John has been the valiant fighter throughout this 13 year journey. I knew he wouldn't want to stop now if we had a chance to find the origin of the fevers and a possibility of a treatment. He just wasn't aware to make the decision.

The procedure went well considering all of the risks they warned me about. He actually came out of it with better coloring, less difficulty breathing and the gift of a few clear hours after the anesthesia wore off. He was even awake enough to order some dinner that I knew he likely wouldn't eat until I pulled out the pint of Graeter's black raspberry chip and he ate 4-5 bites. His nurse walked in and saw me scooping it out and asked what we were celebrating - was it our anniversary? I told him we were just celebrating the moment. 

What I am learning is to be grateful for every one of those brief moments. 

Julia