Turning right out of the hospital parking lot, I headed for home. My mind in auto-pilot mode, I made the prerequisite turns without thought. Winding through town, the landscape transitioned from city to suburbs, each successive mile spreading homes further and further apart.
Finally, my car crested the summit and a panoramic vista of our rural valley unfolded below. Coasting down the steep, winding road into our valley, pink cotton candy clouds drifted overhead across a stormy pale blue-gray sky. As dusk descended, my mind emptied as I breathed in the beauty of this valley. This part of my drive home never failed to stir me.
Yet, this time, the stir was different. Instead of joy, I was filled with apprehension. Home is now an eerily quiet place, a place adrift without Charlie.
I’ve been absent from my blog for awhile. A month to be exact. I’m having a hard time finding my way back. And, that’s odd for me because I love working on this blog, creating content and recipes, taking photos and sharing with readers. But, the wind has been sucked out of me and I don’t know if I can get it back.
At the end of March, life made a left turn into oncoming traffic and our world came crashing apart. And, even today, it is not back to normal and may not ever be again.
My husband, Charlie, is sick. He’s very sick. Currently, he is in a rehab hospital trying to learn to use his legs and arms again.
I should have known the signs…after all, I’ve been dealing with elder care issues for my father, mother, aunt (my mother’s twin), and their 90-year-old cousin for 5 years. I’ve been to emergency rooms and hospitals over these past 5 years more times than I can count. I quit keeping track when those trips reached 100 and that was about 3 years ago.
Around the 3rd week in March, Charlie suddenly lost the use of his left leg. He was trying to get into our shower and just couldn’t lift it. He yelled for me because he was afraid to let go of the shower door, afraid his left leg wouldn’t hold him if he let go. I eased him back onto his scooter and he didn’t have a shower that day. We thought it was something that was temporary and would pass.
Then, he started feeling like he was getting a cold – congested and stuffed up. He cleared his throat all the time, but didn’t cough. Just that noise you make when you feel like something is stuck in your throat and you need to get it loose.
And, he started waking up in the middle of the night, sitting up on the side of the bed because he couldn’t breathe. Plus, his legs and arms started to swell, twice their normal size.
I kept harassing him, saying we needed to get him to the doctor’s office. He kept saying, “Carole, I’m fine; I’m just catching a cold.” In hindsight, he just didn’t want to worry me. I was overwhelmed with my aunt’s escalating health care needs at that moment and he didn’t want to add to my burden.
Since his left leg was no longer working, we couldn’t get him in and out of a car by ourselves. So, getting him to that doctor’s appointment became impossible. Then, I remembered that my mother’s hospice doctor made housecalls. So, I called him, told him Charlie’s symptoms and asked if he could see Charlie at our home. He came the next day.
Since this was the first time he’d met either of us, he asked Charlie about his health history:
Charlie contracted polio when he was 2 years old (he’s 64) and didn’t walk independently again until he was 7. For the first few years, he was in an iron lung in a children’s hospital. Between the ages of 4 and 7, he had multiple surgeries, transplanting muscles from his thighs to his calves, a spinal fusion (followed by time in a body cast) and surgery to repair one of his clubbed feet (no one remembers why they didn’t fix his other clubbed foot). After the spinal fusion, he walked without braces and crutches and even climbed Yosemite Falls when he was a teenager. When he was around 50, he started using a cane. When he was 58, he started using a walker. Then, 3 years ago (61), he started using a mobility scooter full-time.
Then the doctor asked about what was going on now. After listening to both of us describe his current symptoms, the doctor got out his stethoscope and oximeter (oxygen meter) to begin his physical examination of Charlie.
Side Note: normal oxygen levels are between 95% and 100%. Anything below 92% is considered a low oxygen level and is cause for concern.
The doctor took Charlie’s oxygen level first. It was 79! He put the oximeter on Charlie’s other hand and it was still 79! We have an oximeter, so I got out our oximeter and asked the doctor to check Charlie’s oxygen level with it, just to make sure that the doctor’s oximeter wasn’t malfunctioning. It was still 79!
The doctor said “call 911.” I left the room and called 911 from our master bathroom. I didn’t want Charlie to hear me talking to the 911 dispatcher nor did I want him to see me crying.
The fire department arrived first followed by an ambulance. In all, about 8 firefighters and paramedics attended to Charlie. They immediately hooked him up to oxygen and loaded him on a gurney. When we arrived in ER, they continued giving him oxygen and started other tests. Within an hour, Charlie lost consciousness.
All hell broke loose.
Several doctors descended in the room while the nurse tried to rouse him by rubbing knuckles on his chest. Within a few minutes, they got him back. One of the doctors looked at me and said, “this is important…from now on, if anyone asks you if he is CO2 retentive, the answer is yes!”
What this means is that when someone has a CO2 retention condition, the body doesn’t expel enough CO2. We breathe in oxygen and expel CO2. Someone with CO2 retention retains too much carbon dioxide. By giving Charlie increased levels of oxygen (the treatment for a low oxygen level), it also raised his level of CO2 because he retains it, causing him to lose consciousness.
After many hours in ER waiting for test results, Charlie is admitted to the critical care unit with a diagnosis of pulmonary hypertension. Because they were treating his edema with Lasix, his blood pressure tanked hovering around 70/45.
Treatment for low blood pressure is to administer IV fluids. However, they couldn’t give Charlie fluids because of his severe edema and his respiratory failure. He was immediately transferred to ICU, spending 3 days there with round-the-clock care while the doctors, nurses and respiratory therapists danced a delicate balance treating both the edema and low blood pressure plus his fluctuating low oxygen level.
Alarms were constantly going off and it was impossible to get any rest.
On day 4, he was transferred back to the critical care unit where he remained for 12 more days. The team of pulmonary doctors treating him have told us that Charlie’s “new normal” for oxygen levels are between 88% and 94%, meaning we are not to be alarmed unless his oxygen level falls below 88%.
On day 16, they released Charlie to home.
Still unable to use his left leg, he couldn’t transfer from bed to scooter to chair to shower, etc. You get the picture. In addition to losing the use of his left leg, he had lost strength in his triceps. Both triceps. They (doctors) theorize that this bilateral loss of strength across his upper body is neurological, but until they can run further tests, this is just a working theory. So, with no muscles to help him help himself, Charlie was bedridden. Plus, he was on oxygen 24/7. I became his caregiver.
The first day home from the hospital was a total disaster. Unprepared, in any way, to handle the care needs of a bedridden invalid, we were both exhausted by the end of the day. After a few days, a home health team arrived and a rotation of physical therapy, occupational therapy, nurse, doctor and home health aide came to help support me. But, while their support was important to Charlie’s recovery, it was intermittent – an hour here, an hour there.
Everything I learned about Charlie’s care was new. I learned how to change bed linens with a full-grown person, with limited ability to help, was in the bed. I learned how to keep him clean and attend to his personal hygiene. I learned how to turn him every two hours so that he wouldn’t develop pressure sores.
I learned how to run all his oxygen equipment: the oxygen concentrator that is electric and plugs into the wall, the oxygen tanks that need to go everywhere with him when he’s outside our home, the colossal oxygen tank that was brought to our home in case of a power outage that will provide oxygen for 38 hours without electricity, the CPAP machine and mask that he wears at night to pump the CO2 out of his body.
I learned how to help him do his physical therapy and occupational therapy exercises on days that he wasn’t scheduled to work with the home health team. I learned to take his vitals signs several times a day and administer his medications.
In short order, I learned to be his nurse.
After about a week, his care needs got easier. Not because he was better, but because everything I was learning was no longer new to me and I developed a rhythm and created a schedule. He couldn’t be left alone, so anytime I needed to do anything, even grocery shop, I had to ask a family member to come “babysit” Charlie. I was grateful for these small “breathers.”
Eleven days into this new routine, Charlie had a set-back. His oxygen tanked to 87% and he yelled “Help me up; I can’t breathe!” I sat him up and increased his oxygen level. He broke out in a sweat, throwing his covers off saying he was too hot. I took his temperature: it was 96.7, two degrees below normal. He didn’t have a fever. I took his blood pressure: 170/105. I called his doctor who advised me to call 911.
This time, the paramedics took about 20 minutes to get to our home. There was a training event going on in our community and they were short-staffed. So, paramedics arrived from a neighboring city. While we were waiting, I tried to keep Charlie calm and soothed his brow with cool washcloths.
When they arrived, they immediately got him loaded onto the ambulance and I followed them to ER. This time, Charlie was in the hospital for 9 days.
While in the hospital, they pumped him full of Lasix again, overdoing it to the point that he became dehydrated and went into renal failure. So, they treated him with IV fluids, without monitoring his output. After several days, they decided maybe they should monitor his output, so inserted a Foley catheter.
Immediately, he filled two bags with urine. Then, a clot pushed through the tubing into the bag followed by dark, deep red blood. He was bleeding internally.
They called in a urologist who assured us (and the nurse) that Charlie was going to be okay. The clot had caused his bladder to retain urine and so his bladder expanded straining the blood vessels. Once the clot broke loose, the strained blood vessels burst causing blood in his urine. The doctor explained it would take weeks to clear up; the bladder would heal itself and Charlie’s urine return to normal. But, he would need to have the Foley catheter for a least a month.
Charlie was released to home and the care cycle began again, only easier because of the Foley catheter.
During this second time at home, the physical therapist and occupational therapist told us that Charlie would be a good candidate for an acute rehab center. Home health PT and OT sessions were going to end and he would not be far enough along in his recovery to transfer nor remotely independent. Working with my health insurance company, they got approval to transfer him to an acute rehab hospital where Charlie remains to this day.
He is making progress. But, it is slow. His release date is unclear, but I’m grateful for the excellent care he is receiving.
Some days he’s euphoric: the day he sat in a wheelchair (instead of bed) for the first time in two months, the day he maneuvered the wheelchair down the hospital’s hallway unaided, the day he got on his scooter for the first time since March 27th, the day he stood up for the first time (with assistance).
Other days he’s quiet and introspective: the day they took out the Foley catheter (after 30 days) and then had to put it back in after a whole day without urinating, days when he’s so wiped out physically from the physical therapy sessions that he wonders if he’ll ever get to that place again where he doesn’t feel exhausted, days when he can’t get comfortable in the hospital bed because that’s where he’s been for so long now.
The doctors want him to have several other tests. But, here’s the rub: the tests are “outpatient” and Charlie is “inpatient.” So, the tests can’t be done until he’s released and home and I take him to the places to have the various tests. But, to accomplish that, he has to be able to “transfer”. Right now, he can’t transfer without the assistance of a team. So, the hope is that this stint in acute rehab will get him to that place and then we can move forward with more tests.
In the meantime, I’m riding shotgun. And this blog remains an afterthought.
It’s a hard road honey
And there ain’t nobody I’d rather be next to
It’s a rough ride baby but we’re gonna make it together
Me and you
When you’re tired I’ll grab the wheel
And you take over when I’m done
Love is taking turns riding shotgun.
– Christina Aguilera, Shotgun
Until Next Time,