For 8 days in November 2017 I lay in a hospital bed basically writhing in pain.
Rewind to the beginning of that 8 day period and I was being rushed to hospital in an ambulance as my left leg, the one with the non union femur fracture, was like a wooden block and it would not lift off the ground. It wasn’t numb, it was excruciatingly painful.
A quick phone call to my Orthopaedic Surgeon and my 8 day hospital journey began.
After a few hours in ER I was admitted to a ward. My hospital is a Private Hospital and I always get a private room. They were undergoing major renovations this visit, so some rooms were closed off. Generally there are only 2 or 3 shared rooms per ward. I was desperate to get to my room so I could deal with my stoma in private and finally get some peace and quiet after the craziness of the ER.
A lovely nurse popped her head into my ER bay where my husband and I were waiting. Actually it was a bed in a stationery cupboard due to lack of space and that auspicious start really defined how this entire hospital stay was going to play out.
So back to the nurse. She very sheepishly said, ” I’m so sorry Sam, we have no private rooms tonight, we have to put you in a shared ward”. My heart sank but I told myself, as positively as I could, that I’d survive and it was only for one night. They had promised me a private room the next day, how bad could it be?
Not Quite The Room With A View
We arrived at the ward only to find it was filled with high care geriatric patients. They were at risk of wandering and needed a nurse in the room 24/7. I took some comfort from the fact that at least a nurse was there. The logistics of a shared bathroom in this environment, when I was on two crutches and needed access to my stoma supplies, was a little too much to bear I must admit. I felt like wandering too at high speed out of there!!
I was in so much pain that the first night was a bit of a blur. The next morning I had a team of Specialists all working on my case. My Orthopaedic Surgeon, my Endocrinologist, my Colorectal Surgeon, my Pain Management Specialist, my Clinical Immunologist and a Rheumatologist was brought in for good measure.
Each one wanted to poke and prod me, take blood, test out my leg movement and the worst part of all was that each one wanted a different kind of CT Scan, xray, ultrasound and MRI.
Finally Some Good News…But Not For Long!
Thankfully the following morning the nurses gave me some good news. I was top priority for a private room given the complexity of my health. I was so relieved and by mid afternoon my husband was settling me into my new “tenporary” home. We thought now at least I would feel settled for the rest of my stay.
Hmm…we were wrong. Three days later a nurse popped into my room with a slightly nervous smile on her face. “Sam, I’m really sorry but due to renovations this entire ward is closing down tomorrow and we have to relocate everyone by 10am Monday to a different ward, on the other side of the hospital”.
My heart sank again. I was exhausted. I had not slept since arriving in hospital. I’d been transported backwards and forwards to the xray department numerous times. Each transportation increased the pain due to the impact on my bones. I was also told that the relocation was only for one night and we would have to move back the next day. Oh my goodness!!
I was so numb from the news I forgot to ask if I would still get a private room in the new ward. I didn’t have any energy left to care really. Drugs and tests and examinations were all taking their toll. I had come to the end of my resources.
Thankfully the move to the new ward went smoothly and I was one of the first patients transferred with a personal Nurse. I was so relieved to be wheeled into a large private room with a big picture window, looking onto a couryard filled with greenery. It was tucked down a little corridor and so peaceful. I had left this entire relocation in God’s hands and I had been so looked after.
There were a few issues which kept the chaotic theme running. The bathroom had a power point hanging off the wall and the TV would turn on but wouldn’t turn off. The air conditioning vent had a plastic bag hanging off it to stem the cold breeze. It was an old ward!
A lovely maintenance man was called and he couldn’t do enough for me. Within 10 minutes he had everything fixed and I could finally breathe a sigh of relief and relax a little. At the back of my mind though was the thought of having to do the move all over again the next day.
I ended up with 6 scans/x-rays etc in total and each one caused severe pain to shoot through my bones.
On top of that the Pain Management Specialist, who was so keen to reduce my pain, started me on large amounts of Palexia and a Ketamine infusion.
This site gives an excellent overview about Ketamine Infusions
Now, I really don’t do well on strong pain killers. The only one I can tolerate is Endone and even then I have to divide it into regular 2.5mg doses every 5 hours to avoid being ill. So you can imagine what a star patient I was on 200mg Palexia and a Ketamine infusion. I was so nauseated and dizzy I couldn’t get off the bed. I went from being hyper to unable to control my tears. I felt trapped and overwhelmed which is just not me at all.
I couldn’t sleep with the Ketamine infusion as it was being infused through the right side of my abdomen. It got moved every 12 hours but because my stoma is on the left side of my abdomen we couldn’t rotate sides. That meant I couldn’t lie on my right side to sleep which I need to do to take the pressure off my broken left leg. It was just a nightmare that had no escape route!!
“You Obviously Just Don’t Do Drugs”
Finally my Pain Management Specialist agreed that I just don’t do drugs. On day 6 of my stay we stopped the Ketamine infusion which thankfully restored the normal taste in my mouth. The Ketamine had caused another very un welcome side effect. Everything tasting like salt, even water. It was disgusting!
I felt like a failure. I’d reacted badly to the medication and even worse none of it had touched my pain.
The scans revealed all kinds of things, none of which could be fixed without surgery and we all agreed I am not up to dealing with major surgery unless an emergency.
Some of the issues just can’t be fixed. My legs have muscular atrophy which has worsened since last scan. I have avascular necrosis in my hips. I have calcification in the muscles in my left leg. My broken leg remains broken. I have damage to my sacroiliac joints with stress fractures. I have disc prolapses throughout my lumbar spine threatening to compress my spinal cord and the list goes on.
My Rheumatoid Arthritis can’t be treated because my medical team believe the Disease Modifying Medication, including biologics, used to treat RA, will adversely affect my bone disease. This was the final decision by two Rheumatologists. That means I’m at high risk for joint deformity and disability but the bone disease will cause even greater damage, so we have to weigh the risks.
The bone disease causes pathological fractures throughout my body. I’m basically being attacked on every angle from a muscoskeletal perspective.
The non functioning leg and escalation of pain is all the result of my bone disease progressing. There remains no treatment and no cure.
I had some of my Specialists sit with me with tears in their eyes. I found myself comforting them and saying, “It’s ok, at least we’ve tried a few things, it’s good to know why the pain’s increased and I’ll adapt”.
I told my Pain Management Specialist that I’d been approved for a Level 4 care package (highest level of care in Australia). I thought she might say, ” Oh you won’t need that”, instead she quickly responded, “so you should”. It’s moments like those when the reality of my situation punches me.
I did however receive a bit of a reprieve when an excited nurse, who was accompanying me back from the xray department, told me an email had just been received advising that we would all be staying in the new ward. The other ward would be closed for 3 months.
Yeah!! I could stay in my quiet peaceful room. That night with no Ketamine infusion in my abdomen and with the knowledge of no more moves or tests to endure, I finally slept.
The whole hospital stay was really a dead end. I knew it, my Specialists knew it and none of us really knew what to do about it. Well, that’s not strictly true. I knew the best place for me was home. I wanted to go home.
Can I Please Go Home Now?
Reluctantly, my Specialists agreed that home was the best place. I could rest more easily, manage my pain meds without relying on the nurses schedules, eat food that worked for me and I would continue to be monitored closely as an outpatient.
The Doctors and Nurses were amazing as always. On one really bad night a beautiful nurse brought me a much needed cup of tea at 3am. Gestures and care like this made a nightmare hospital stay just a little more bearable.
Despite my inner turmoil at what was happening to me and around me, I was constantly surprised at the amount of times Nurses came into my room to seek refuge. They said my room was serene and peaceful. That in itself was a miracle as I felt far from serene and peaceful.
All I could do in my darkest hours of pain was cling to God’s promise that “He would never leave me nor forsake me” and ask Him for strength for each day and hope for tomorrow.
“He will never leave you or forsake you. Do not be afraid; Do not be discouraged.” Deuteronomy 31 v 8
After being home for two days, my pain remained and I came down with a viral infection (a parting gift from the hospital). I was finally sleeping at night though in my own bed…pure heaven.
I came home with a clearer picture of where things are at with my bone disease and I now know that my regular pain medication of Endone is the best for me with the dose slightly increased.
At the end of the day, if at all possible, there is just no place like home 💗
If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
I’m a member of the Chronic Illness Bloggers Network and the Grace Girls Facebook Group
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WEGO Health Award 2018 Nominee