A long and winding road, our 3 year journey through medical trauma

When your nineteen yr old son, a healthy athlete who just started University months ago, comes home sick, you expect a quick turnaround for him to get better to head back to school, back to his exciting college adventure. On Friday March 8th, the Centra Care doc said you need to take your son to the emergency room at the Oviedo hospital, so I did. For a kid that was hugely afraid of getting stuck with a needle, so much so that he would break out in a sweat and need someone there to give him courage, the scar terrain of his body three years later is breathtaking to say the least. To say he has been at war would be accurate. Walker has fought tirelessly for 3 years to stay alive, enduring pain and suffering usually reserved for POW’s.

“What has your son been doing?”, asked his 1st ICU doc in the Oviedo hospital after reviewing his chest X-ray that revealed a world class softball sized pneumonia in his left lung. “Uh, working out, playing volleyball, tumbling, going to class at FAU” I said, thinking this was an odd question. “Oh, and he has been vaping”, I added. The doc paused, pinched his chin, looked up and away and responded, “Oh, I see, well I promise we will take good care of him, but be patient this may take some time”. His mom, being a nurse for 20+ yrs, knew well that it would take some time to cure him of such a huge pneumonia infection. But nothing gave us a clue of the dangers that lie right around the corner.

In our minds, we were confident that Candy’s decision to move Walker to the ICU at ORMC would prove to be successful and we would be heading home before long, but such was not the case. Much to our horror, the dominoes continued to fall until Sunday March 17th when his lungs failed completely and his heroic doctor at ORMC decided to fly him by emergency helicopter to AdventHealth to put him on life support, ECMO they called it. With a chaplain in his room standing by, Candy, her sister Nickie, and myself prayed fervently over his body as they prepared to wheel him out for the flight. We, and most all of Walkers local family, rushed to AdventHealth to witness his arrival, to kiss him once more as he entered surgery to attach the ECMO machine.

We might as well have been clubbed in the head, such was our shock at seeing Walker that night in his brightly lit room on the specialized ECMO floor hooked up to numerous beeping machines and multiple dripping medications, only 10 days after going to a doctor for a fever and a really bad cough. A shock that became a nagging terror as we watched him fight for his life for 63 harrowing days on ECMO followed by 67 more days of very tough ICU care until he was well enough to return home on July 17th. It was in June during his ICU recovery that news of the evident dangers of Vaping the flavored Juul products, Mango was Walkers flavor of choice, became big news with reporters calling it an National epidemic.  Again, we felt clubbed up side the head to learn that this “safe” alternative to smoking was anything but. While his return home was an exciting reason to celebrate, it soon became very clear that we were in for a tumultuous ride. 3 ambulance rides in the 1st month, extreme wound care for a huge bed sore that took 6 months to heal, early morning runs to the dialysis center, a hefty continuously running oxygen machine, and followed shortly by stay at home peritoneal dialysis such was our new reality. 

Needless to say, the next 21/2 years have been very hard on all of his family as we watched Walker slowly decline to the point that without a transplant he would not survive. Yes, we had many good times together yet they were tinged with a dred that our son would not live much longer. Oh yeah, then along came COVID in March of 2020 to add to our angst being the danger that faced Walker whenever he went out or when we came home because he could not survive a bad case of COVID-19 with his one badly functioning lung. It was now January 2021, that Walker began the process of being evaluated for a transplant by AdventHealth where they estimated he had about a year and one half to live. After many, many test and appointment after appointment and several warnings of non-compliance to their rules, AdventHealth decided to turn him down in September of 2021. It was a blow to all of us, except Walker, he seemed to take it in stride with a knowing that it was just not meant to be and a relief for him to move on from the extremely traumatic experience at AdventHealth, granted a life saving experience yes but not without personal cost.

His road to a transplant really began in earnest in October of 2021 when they called him from the Mayo Clinic in Jacksonville and invited him to come for a 3 week period of testing and evaluation. Since the very first visit, it has been a marriage made in heaven as they say. He and we marveled at how gracious and kind and understanding they have been to Walker and to his family. We had hope again that a transplant may happen but you never know for sure until someone actually puts you on a list. We had been told he is a potential candidate but that his case is complex and risky. Walker stayed strong and pressed on meeting with Mayo several more times in person and on zoom. We kept hope alive and prayed along with many, many others for a transplant to happen. So, in late February Walker got the call that the Mayo transplant committee approved him. While he was very excited, he also had to stare straight into the dark abyss of “what if”, thinking about going back into surgery with all that entails. He was actually put on the transplant list about the 3rd week of March 2022, however, he found out shortly thereafter that they had listed him with a score of 21 which meant he was low on the list and may never get it. So, he spoke to his Pulmanary doctor about it and the doc wrote to the board arguing for a higher rating and they moved him to a position of 50, which is the sweet spot for getting it done, in the last week of March.

Tuesday morning April 5th, only a week later, about 930 am Walker got “the call” that it was a Go for transplant. I was leaving the house just about to pull out of the driveway when Walkers calls me, “Dad come inside”. I went inside and got the hot news, we just starred at each other for a few minutes then I numbly went about packing my bags head spinning. Walker said, “I think I’m going to vomit”. Candy headed home from Dr. Phillips were she was at work and Laura drove home from school. All of us a bit in shock, or maybe a lot in shock. We were loaded up and left our house by 1230 and arrived at Mayo by 230. They immediately set him up in a room and we all waited together. We started to hear bits of information as various transplant personnel and doctors came by to visit. Word was they had sent a team to inspect the organs for approval and that they were at a long distance. Walker waited. Then we heard it may be late that night or early the next morning depending. The night wore on and nothing happened. Candy stayed on the couch, Walker tried to sleep, Laura and I stayed at a nearby Hyatt. We had heard to be prepared that it may happen or it may not depending on many factors, we all waited nervously.

Laura would tell you that Dad popped up with a start at 7am arms flailing seeking to grab the phone blindly beside the bed getting the call from Candy that the doctors said the surgery was moving forward and that they would be in shortly to prep Walker. Laura and I bounced out of bed, dressed, and scooted to Mayo as fast as legally possible. We waited about 30 minutes together, we prayed together, then said a very, very hard goodbye to Walker as he was wheeled out to surgery about 8:30 am. Of course we were very nervous but we had faith that God had put Walker together with the Mayo Team and we were very confident in them. We waited, we prayed, and we prayed again, everyone involved prayed for 15 hrs till his surgery was finished and they came to tell us we could see him. Your first sight of someone after 15 hrs of a major triple organ surgery is rough, they don’t look much like themselves and it is scary. We were shaken but put at rest by the casual confidence of a team that were relaxed, unhurried as they went about their business. They said everything went well and that he is in good hands for the night, to get some rest.

I’m not gonna lie, the next couple of days were very hard as we watched Walker struggle against their efforts to wake him. This brought back very unpleasant memories from the trauma he suffered, we suffered, 3 years ago as he fought for his life from infection. But with each passing day as the doctors keep using the word good in regards to his physical progress, the sickening feeling we both had, PTSD really, began to lessen as we saw that things were not going wrong like before but improving each day. And that’s were we stand today 18 days post surgery, each day Walker has improved and improved again and in all likelihood will be out of the ICU in 2 weeks or so we guesstimate. Walker looks great! We have been greatly blessed thanks be to God for his favor upon this surgery and for the miracle of a successful double lung and kidney transplant. Welcome back sweet Walker, we have missed you so very much.

Wow! Wow! Wow! It’s incredible what is possible today. Many, many prayers have gone up from so many people far and wide for a safe and successful transplant and our prayers have been answered! Thank you God 🙏 We have lots of celebrating to do. They estimate a 3 month period for a solid recovery, 1 month ICU and 2 months outpatient on Mayo Campus with Mom and sometimes Dad. We are officially kicking off Walkers Campaign to raise funds to help manage the next 6 months (he must be within 20 minutes drive time to Mayo) that Walker will have to be in Jacksonville. See www.givetaxfree.org

We are so very thankful for your prayers, your love and support through these challenging years. Walker is out of the woods and on the path home filled with love and light. Praise God from whom all these blessings flow, amen.

Go Walker Go!!

Love and blessings to you all

The McKnights