by Paige Wetzel
I racked my brain trying to think of why Josh might be getting sick. As I thought about the previous week, I realized the steps I’d likely missed as his caregiver. A week ago, we had completed a three-day trial run at Building 62. Josh was meeting his required benchmarks in physical therapy, and his doctors believed he could handle outpatient living. The building was actually an old Navy barracks before Walter Reed moved from Washington, DC, to Bethesda, so the rooms were like a typical two-bedroom dorm room, complete with a mini kitchen and mini living room setup, except these rooms were adapted with roll-in showers and lower countertops for wheelchairs. This was a much-anticipated privilege because we could finally, after three months of inpatient living, be able to control who came in the door. With our overnight bags, we headed up the hill to freedom.
We checked in to Building 62 on the afternoon of August 10 and plopped onto the couch like we were on vacation. The time went so quickly, but it was amazing. For the first time since the night before I dropped Josh off for his deployment, we were alone together. We slept in the same bed, binge-watched TV shows, and interacted with people when we felt like it. I thanked God for a successful, pain-free attempt at physical intimacy, a marital sanction that we both had feared would be lost forever. Over and over urologists would ask about the “function” of Josh’s male parts, and I would always think, Did you not just walk into this room without even knocking? And now you’re standing there talking about whether Josh would be able to get it on? Get out of here, man. Reconnecting and maintaining this sacred part of us after losing so much lifted a burden off of us that I don’t think we could have carried into this unknown future.
A weekend of lounging around was awesome, but things were different when Monday rolled around. Transitioning into a weekday while living in outpatient showed the difficulties of living with a severely wounded person. Once Josh got showered, I helped clean his wounds and wrap them up for bed. Then I would have to give him his meds and blood thinner injections in his abdomen. I was very apprehensive about administering medication. Josh took about nine pills a day during the week (we tried to taper the pills on the weekends since there was no PT and no surgery), and I was so afraid of mixing them up or not giving the right dosage at the right times. We were also responsible for calling his commanding officers at certain times of the day to check in, and we had to make it to all of his appointments on time. If we didn’t do a good job with this, we could be denied permission to move to outpatient. Josh also grew increasingly frustrated trying to do things himself. He tried to carry things in his lap as he propelled his wheelchair, but as soon as he stopped, everything fell on the floor. He also ran his chair into everything. I wanted to help him as much as I could, but at the end of the day, I knew making him as comfortable as possible defeated the purpose of releasing us from inpatient care. We agreed that he had to get his frustration under control in order to prove that he was able to leave the fourth floor. We received good remarks on our trial run, and our command said they would let us know when a room in Building 62 opened up. Josh was pumped and took this as permission to not be as careful and to go about life with reckless abandon.
The day after we left Building 62, Josh got way too excited in PT and ripped open his donor site from the flap surgery. The healed donor site was supposed to be a hairline scar that went from his armpit to his spine, where the surgeons removed the part of his back that was now the bottom of his right leg. I had noticed Josh had already developed a fluid pocket at the donor site from too much arm movement. I’ve got this, I thought, like I was some trained medical professional. It will just need to be drained with a bulb drain that will ensure no more fluid will build as he’s moving around. This seemingly no big deal of built-up fluid hardly compared to the nine-hour surgeries three days a week and, you know, having a husband with no legs. As usual, Josh was overzealous and tried to transfer from his chair to a table in PT by leaping out of the chair. The minute he hit the table, I could see the back of his shirt becoming saturated with fluid. The fluid pocket had ruptured. In my normal fashion, I rolled my eyes and said, “Really? That was the only way to get out of your chair?” Josh smiled and shrugged his shoulders like he couldn’t help it. Josh was not going to be slowed down by this. Even though Josh didn’t have prostheses yet, his physical therapists were confident he could start going on hospital outings like sporting events. He was not going to miss out on that.
We wheeled Josh over to the wound care section of the Military Advanced Training Center. The MATC was the physical therapy area where patients learned to use prostheses both for hands and legs. Splints, walking aids, and prosthetic adjustments could be done on the spot, then they would try them out. The MATC was all about seeing what worked for each person, because no two amputees could rehab the same way. The space contained exercise equipment like physio balls and dumbbells, video games, and a walking track with a harness that would catch the new walkers. Visitors often described the MATC as the most inspiring place in the hospital. We weren’t to the point where Josh was being fitted for prostheses yet, but at the rate Josh was going, we were close.
However, this day in the MATC wasn’t as cool as watching an amputee stand on his own. When we wheeled back to the wound care area, my suspicion was confirmed: Josh had ripped open the month-old donor site. PT was officially over. We went back to our room on the fourth floor and waited for the plastic surgery team to come look at it. The wound itself was pretty gross, because the fat and muscle from the dermis had been removed to create the flap, so when the incision was opened, you could see straight to the scapula muscle. I was learning more in real time about muscles, dermis, and bones than most ever wanted to have a front-row seat to. The doctors felt around the hole in Josh’s back and found that the fluid in his back had caused the skin to separate itself from the back muscle—the skin and muscles were moving separately because they were not fused together. The plastic surgery team decided that a wound vac would be the fix to get rid of all the fluid and help the skin and muscle adhere to one another. At this point, we thought we were done with wound vacs because the flap he had there was the result of the surgery that would close the last major wound. Nonetheless, the plastic surgery team took the sponge and shoved it under the skin through the quarter-sized hole in Josh’s back. They covered the hole and sponge with cellophane bandages and turned the machine on and it began pulling all the fluid out of his back. The plan was to monitor the wound daily, and as the vacuum was pulling less and less fluid, the sponge would be cut smaller and smaller until it closed. Josh grumbled about being “plugged in” to another machine, but he brought that on himself. Despite the emergency bedside procedure, Josh and I were still able to attend a baseball game at Camden Yards that night. It was no big deal to him, just another procedure.
The morning after Josh’s back ripped open, the wound vac was alerting us that it was clogged. By this point, we had been in the hospital almost two months, and I had passed my crash course in nursing. I knew enough about IVs, PICC lines, and other equipment to at least know when they didn’t function correctly. I began squeezing the tube to the wound vac, thinking that maybe it was just backed up somewhere. The beeping would stop and the tube made its normal sound for about twenty minutes, and then it would start alarming again. I told our nurse that the wound vac was clogged, and I couldn’t figure out where the issue was. Several hours passed and no one came to change the wound vac. When I went to check the status of the wound vac change, she informed me of a new hospital policy that only doctors can change wound vacs. Can I just say that I cringe when I hear the word policy sometimes? My life experiences have led me to believe that policies are an invitation for me to find all the loopholes so that I can do what needs to be done. I rolled my eyes and said, “Well, when can a doctor come up here? This machine is beeping every five minutes.” Our nurse said she was working hard to get someone up to our room. After about five hours, the wound vac was getting zero suction. Of course, this was happening on a surgery day (s
till every Monday, Wednesday, and Friday), so none of the doctors were available. The nurses were working tirelessly to get someone up to our room, but it was all hands on deck in the OR. However, we were told repeatedly that there was nothing to worry about. I was thankful something like this didn’t happen over the weekend while we were at Building 62. Maybe if the nurses had to be annoyed with this beeping like I was, they would get it fixed faster.
Finally, very late that night, a doctor we had never met came and fiddled with the wound vac and Josh’s bandages. No doubt this guy lost a game of paper, rock, scissors for this job; he was a super young guy, and it was obvious he had not been allowed to do much on his own. The sponge was not changed but the tank was emptied, the tube was adjusted, and the machine was reset. Thank goodness. Now I can get some sleep. About 1:00 a.m. the machine started beeping again. I was officially frustrated. We alerted the night shift nurses and tried to sleep through the beeping. Annoyed as we were, we managed to get a couple of hours of sleep that night.
The alarm clock the next morning was the wound vac again. Aware of how much time had gone by with no suction in the wound, I start thinking about the fact that the whole sponge and vacuum needed to be replaced. The sponge had to be saturated by now. I really wanted to hurry and get this done before the evening, because Josh was going to speak on a live feed at his home church, North Glencoe Baptist. They were having a revival night called “The Vibe.” There would be music and worship, and then Josh would speak on a live feed from a projector. We had set up the Wi-Fi and computer in my and Cathi’s room at the Fisher House, a room that I might get to leave soon, because after the live feed, we were headed back up to Building 62 to check out our potential room assignment. We got Josh showered, shaved, and clothed. We sat around all day just in case a free doctor could come up to our room, but the wound vac did not get addressed. The medical staff wasn’t concerned with its beeping and lack of suction at that point, so we headed to the Fisher House to get ready for the live feed. We set up and tested the Wi-Fi, got Josh ready, and made sure all systems were a go. Waiting to get started, I noticed Josh was looking extremely fatigued and a little green. When I asked if he was okay, he said he just wanted to lie down. About thirty minutes before the live feed was supposed to start, Josh began shivering and sweating with fever. It was Nana’s week to come visit, so she, Cathi, and I laid hands on Josh and started praying. About five minutes before the event, Josh’s fever broke, and he was able to put on the face of a hometown hero on the path to recovery. Josh did a beautiful job giving his testimony—telling the crowd that he had already decided his life was richer without legs than it was ever going to be with legs. We had an emotional but much-needed night with the town of Glencoe. Events like “The Vibe” really helped us understand how big our small town was for us. We felt refueled, but we were beyond ready for bed by the time it concluded.
Reveling in how awesome the service was, we headed back to check out our potential spot in Building 62. However, I had the worst gut feeling about Josh’s fever. His body temperature issues had been under control for over a month, which told me something wasn’t right. As I pushed his wheelchair and listened to Josh go on about the night, I prayed in my head, God, I’m going to suggest that we go get his vitals checked. Please make him consent to it. I do not want to face an emergency situation alone in Building 62. In my sweetest Southern wife voice, I asked Josh if he would pretty please just go up to the fourth floor to let someone check his vitals just so we had peace of mind before we went to bed. He rolled his eyes but agreed.
Looking back, I know how much Josh wanted the rite of passage that came with moving to Building 62. What he wanted was to prove that he was at the stage of recovery to do what he wanted on his terms, the stage where you don’t have to sign in and out every time you want to go downstairs to get lunch or listen to your neighbors who don’t get along with their in-laws argue all night. We wanted to sit in a room that had furniture, not a hospital bed with pleather chairs and IV poles everywhere. I dreamed of a full night’s sleep when I wasn’t woken up every two hours to Josh reciting his birthday and Social Security number to a nurse just so he could take his pills. We went from one foot out the door to square one in one night. But I am glad we did, because I knew something wasn’t quite right with Josh. After getting back to the fourth floor, we had Josh checked out, and they were still unsure of what was going on. We tried to rest for a little while until the next check-in, but that didn’t last long.
At 3:45 a.m., I woke up to seven rapid response team members and Rollins hooking Josh up to the EKG again. This time his temperature was 103 and his blood pressure was extremely low. I sat up on my cot and asked what was happening. Rollins said she thought he was going to need another aggressive bolus of medications. All signs pointed to an infection. The fluids ran for about thirty minutes, but Josh’s blood pressure continued to drop. A general surgery doctor ordered a PICC line change in case the infection was coming from there. I firmly requested that he change the wound vac sponge because it had not functioned for a full day, and the only fix had been a change in the hose, not the part that was actually touching the wound. He agreed to change it and began pulling off the bandages. The cellophane was peeled back carefully, then the hose was unhooked. My worst nightmare was revealed—a sponge covered in a yellow pus from a Pseudomonas bacterial infection that filled the room with a smell like rotting fruit. This kind of bacteria lives on the skin but can be life-threatening if it gets in the bloodstream untreated. The bacteria grows in moist places, which made the sponge on Josh’s back the perfect place for it to fester for the two and a half days the wound vac didn’t work. I assumed the doctors would begin cleaning him up when I heard one of them say, “We gotta get him down to the ICU.” What? Wait, seriously? I know he’s not responding to the medicine, but the ICU? Really? The room buzzed around me. The doctor quickly cleaned and changed the wound vac sponge while the nurses were unplugging machines and tossing the cords on the end of the bed. I was left dodging elbows and cords and swinging arms as they moved about Josh’s bed. Outside our room, the charge nurse was calling the transport team to quickly get to the fourth floor. At this point, people were poking their heads out of their rooms to see what the noise was about. I heard a neighbor’s mom tell someone in her room, “I think it’s Josh. I think they are taking him to the ICU.” Was this real life? My life? Was Josh’s life in danger?
In minutes they stormed into our room and started wheeling Josh toward the patient elevators, EKG equipment in his lap. The machine began alarming, and we progressed from a fast walk to a jog. Behind the stretcher, I heard a rapid response team member say, “He’s still going down… Heart rate’s 168 and blood pressure is 80/22… We gotta go!”
Out loud I said, “Jesus Christ! You are in control of this! Do not let my husband die in this hallway!” As I’m screaming this prayer running down the hallway, Josh is lying on the stretcher beginning to glaze over. Come on, honey. You’re okay. You can do it. Josh looked up at our charge nurse, who was sprinting and pushing the hospital bed down the hallway, and said, “Ms. Lytle, are you on Facebook?” Oh my God! What is wrong with you? Where is the Josh who was glaring at me for ruining our last night of freedom? I’ll take him back now, please.
On two wheels, we made it into the ICU. An ICU nurse was waving us into an empty bay like we were in the home stretch of a drag race. The rapid response team began plugging his machines in. The ICU charge nurse rushed in and asked Josh a million questions as she looked into his pupils with a flashlight. Another nurse came in with a handful of syringes for his IV. Then he was propped up, and the doctors began a tag-team effort to unwrap, clean, and disinfect his oozing donor site while the nurses worked to empty every syringe into his PICC line while trying not to trip over rapid response nurses plugging in his equipment. As his machines were recalibrating, his vitals showed a temperature of 103.5, blood pressure 90/30, and heart rate at 151.
In a matter of seconds I was pushed ou
t of the pile of bodies surging around Josh. All the sudden the sound of voices, beeping, and wheels of IV poles across a tile floor seemed like they were underwater. I backed away slowly and fell into an all-too-familiar leather ICU chair in the corner of the room. I sent a text to the entire family that we were back in the ICU and Josh had officially gotten an infection. He was hooked up to IVs with a fast drip of antibiotics and being closely monitored. I stared at the ceiling with my head resting on the back of the chair and thought, My husband almost died in front of me. That heavy thought pained my chest with a pump of anxiety-filled adrenaline. I immediately became nauseous and threw up in the adjoining bathroom. I took about four seconds to thank God for stopping us from going to Building 62 that night, where Josh’s blood pressure could have dropped in his sleep.