Leaving CMH (Again) 08.28.24

Today I woke up in my hospital bed on the 6th floor Med/Surge unit. I have to say that the views, while pretty nice everywhere at CMH, are always the best on this floor. I was transferred out of the ICU floor yesterday evening, since my thoracic epidural had been removed and I no longer required monitoring.

I actually should have gone home Tuesday, or at least that was my hope. In hindsight, I can see how that might have been too optimistic. Tuesday morning I had woken up a complete mess, starting with an active thoracic epidural catheter in my upper spine that was helping to keep my lower chest and diaphragm completely numb. That was primarily to keep me from feeling the intense pain from the chest tube that exited my left side, draining the excess fluid from my left chest cavity. The receptacle it was connected to was half filled with a mixture of blood and amber colored fluid, not a pretty sight. On each arm, two IVs provided opportunity to nurses and hospital staff for quick bloodline access. One of the IVs on my left arm was called an “art” line, which is tapped into an artery instead of a vein and used to closely monitor blood pressure during surgery, providing instant feedback with each beat of the heart. The last blood tap was the one in my neck called a central line, and this provided direct access to the superior vena cava. Finally, a Foley catheter was “attached” to me to drain my bladder without my involvement or direction. I’ll spare you the rest of the details on that one.

When I woke up Tuesday morning (yesterday), I was eager to be rid of the irksome epidural catheter that was tapped directly into my spinal column, preventing me from comfortably resting in bed. It had been a restless night, and I wanted all of the lines and tubes pulled out, but the one in my back was especially irritating. The first to go was my chest tube, which was done by a team of three, or more accurately one resident doctor with two trainees. Dr. Rasich was part of the surgeons team, and I listened as she explained to her fledglings the exact technique and manner of the removal. She then asked me to take a deep breath on her cue, and then to hum any song of my choice until she said to stop. I spent the next 20 seconds frantically searching my mental catalog for a song that fit the moment, so when she gave me the signal I was ready to go. Deep breath in, begin humming, and then the strangest sensation and sickening sound as she slid about 6 inches of tubing out the left side of my torso. Even though my chest was completely numb thanks to the epidural, the experience was still fairly traumatic. I didn’t have much time to dwell on the matter though, because not long after Dr. Allison (anesthesiologist) came in to remove my epidural. The most painful part of that removal was probably the massive amount of tape she had used taking several layers of my skin with it, but the epidural line itself was incredibly thin. I was surprised that it had been able to cause me so much discomfort, but I felt almost immediately relieved. What I did not know at the time was exactly how much heavy lifting the epidural was doing in terms of pain. Over the next two hours I had my art line and central lines removed, and my Foley catheter as well. I sat in my room and basked in my blissfully untethered status for what seemed like two and a half hours before I felt a change. Subtle at first, I felt the initial signs of nerve consciousness in my midsection. Just an itch to start, but that soon developed into a mild ache. Just then, one of the hospital staff Physical Therapists came in and invited me to walk the halls with him. I knew that walking upright was supposed to be good for my lungs, so I took him up on the offer. I walked two large laps around the ICU unit, confident as ever since I no longer had a half dozen attachments, but I could feel the pressure in my chest building the entire trip. I returned to my room and saw the X-ray team geared up and ready to enter my room. They asked if I would sit in the “bed or the chair”and I decided that I would sit in the recliner that was adjacent to my hospital bed, a welcome change of venue from my normal perch on the bed. With some effort, I succeeded in lowering myself into the chair, only to find that the seat was so high, that my feet were left dangling nearly five inches from the floor. As I leaned forward to carefully inspect the problem, Nurse K. came in to assist. I surveyed the area and saw that the chair had some height adjustability to it, and there must be some way to adjust it. At the very same moment that I was investigating the chair issue, Nurse K. took over for Mandi who had been helping me with the chair, and stepped on a black foot pedal toward the left side of the chair.

Wham!

All 200 pounds of me fell from five inches in the air and came to an abrupt stop against the floor. The impact sent a shockwave through my already traumatized thoracic cavity. “Fuuuucccccckkk!” I involuntarily uttered a sound that was both a gasp and a moan at once. Nurse K. was horrified. “I am so sorry! I had no idea it was going to do that!” I sat there catching my breath for what seemed like half and hour, but it must have been 30 seconds, because the X ray technicians that had arrived to do my scans wasted no time coming in to do their work, despite my condition.

After the x-ray was finished, and my chest had begun to swell with inflammation, the pain became steadily worse. As I sat in my chair, distracted by my late afternoon’s visitors, the aches multiplied, and the pains slowly crept up, consuming every corner of my waking mind. Eventually, I could take no more.

I ceased to speak, and crawled into bed, one hand clutching a thin gray blanket, the only source of warmth within arms reach, and the other hand fumbling for the remote that was wired to my bed. My fingers found what I was searching for without the need for my eyes to assist. A second later the red LED light above the button labeled “PAIN” was shining bright, alerting my nurses to my latest plea.

One More Night

Nurse K. had just delivered the remaining milliliters of the dilaudid, introduced directly to the bloodstream intravenously. She screwed the cap back on and cleaned the area beneath, while I felt my muscles tense up for a final moment as the powerful opiate circulated through my system. What followed was a complete and total relaxation. My nervous system’s equivalent of “quiet time”. The chair’s violent death snap most likely created a situation where my pain sensors were sent into overdrive at the exact moment that my epidural effects had begun to fully dissipate. The combination meant that I would be spending yet another night at Chateau CMH. Luckily for me, the drug was immediately effective, but also put me instantly into sleep mode. It was only early afternoon.

Mandi, realizing that the winds of fate had shifted once again, quickly changed plans to include a trip home to shower. She left my older brother Dan in charge of me and left to take care of some things at home, and figure out what to bring back for dinner. Dan’s wife, Jen, left for home to collect their own kids, shower and feed them dinner etc. Soon, it was just Dan watching his unconscious younger brother for a couple of hours, sleeping off a micro-coma induced by pain and drugs.

When I finally awoke, Nurse K. wasted no time in announcing that I was being transferred out of ICU. After all, I no longer needed to be monitored. My epidural had been removed, I was not on an IV drip, or really connected to any machinery in any way. Still in a hazy and dreamlike state, I collected my things with Dan’s help, and was wheeled two floors up to my Med/Surge bed where today’s story got started.

Wednesday Morning

Waking up today was much easier on account of actually having slept the previous night. It’s amazing how a little quality sleep will make you feel. Part of the improved sleep was not having a catheter tube dangling in my spinal column, but the other part was due to powerful pain meds keeping me relaxed and pain free all night. As helpful as the meds are for sleep, they are terrible for writing coherent sentences. I don’t know how many times I tried to begin this post only to lose train of thought or simply fall asleep with phone in hand. Today Mandi and I focused on getting our game plans together for leaving the hospital. Arranging our next steps to meet with Oncologists, gaining the appropriate referrals to Special Oncology Departments at Tertiary facilities, drawing up and discussing our prescription medication plans with our CMH pain doctors, and of course resting so that we don’t return home completely exhausted.

The staff today at CMH were extremely accommodating and even instrumental in accomplishing many of our goals and moving our position forward. I was discharged at 5:00pm today and Mandi chauffeured me home amidst minimal traffic given the time we left. The feeling of leaving the hospital was liberating, much like the last time that I left, even knowing that the journey is far from over. It is hard to believe that I came in for surgery only two days ago at 5:30am, since my life has changed so much since that time. Each time we think life will zig, it zags. Expecting a zag? It will zig. If life has taught me nothing else, it is to beware attachment to outcomes and that belief has served me well so far. The trick to it is to hold this belief while not becoming nihilistic and bitter. To remain optimistic. To remain grateful. I woke up next to my love again this morning, and will tuck both of my kids into bed tonight and kiss them before they sleep. It has been a beautiful day.

Goodnight all.