I broke my ankle badly on October 23, 2015. In a lot of ways this was actually a good thing to happen - this is how messed up our health system is. Yes, it was painful and awful. However, in that split second I solved so many problems. First off, I was admitted to hospital, so getting to and from IVIG would not be an issue (it could come to me). Second, inpatient physiotherapy and occupational therapy were made available. Third, I got to see the neurologist 6 weeks early and he agreed to increase the frequency of IVIG and introduce Prednisone once the break healed. Finally I had assurances from my doctor and the orthopedic surgeon that I would not be forced home until I was ready and until it was safe to do so. A pretty dramatic way to get the system working, granted.
I did not expect to be in hospital for two months. But I was. And I survived, relative sanity in check. I had surgery on my ankle and now have a plate and 6 screws. I am also still wheelchair bound. However, for the first time since this started, I am seeing steady improvements. I remain optimistic and am more determined than ever to get back on my feet. But I'm getting ahead of myself.
The first couple weeks in hospital are a bit of a haze. I was on a lot of pain killers and IVIG. I was shown how to transfer from the bed to a wheelchair and was told I should absolutely not have been walking at the point I was at when the break happened (oops). I was also placed on a crap load of saline which bloated me up like a whale. For awhile the swelling in my left (non-broken) ankle hurt more than the broken one. Physiotherapy and good riddance to the saline drip fixed that eventually. I was given a brace for my left foot to keep the drop foot in check. I was told to wear this whenever I was not in my wheelchair, which was most of the time.
Mom and Dad came up to stay for the first couple weeks and were a great source of company for me and a big help to Scott and Barney at home. I also had regular visits from friends and co-workers that made things more bearable. When on a lot of painkillers the daily schedule in the hospital goes by pretty quickly. I really didn't mind being there for the first 7 weeks or so.
Overtime I became pretty proficient at getting in and out of my wheelchair and wheeling myself around. I did laps of the floor or went on excursions across a pedway to Tim Hortons or Subway. I was thrilled with my feat of strength the first time I wheeled myself across the pedway. My upper body strength is great at the moment. I also lost a lot of weight in hospital. Partly because my appetite was really low at first and then my digestion was off. I hope to keep most of it off (though Prednisone brought my appetite back pretty quickly).
As for my legs... I think the early days in hospital can be considered my bottom. I was totally useless (and numb and tingly) from the knee down and was not able to raise my knee up unassisted (on good or broken leg). The inpatient physiotherapists worked with me to improve this. It took some time to convince them to do more than get me in my chair, but my stubbornness and determination won them over before long. By the end I was gaining strength in both upper legs and making good progress.
After 6 weeks the cast came off and I was given the OK to put weight on my right foot. Physio and OT came in the next day all smiles and said - "do you want to stand?". Of course I did though I was scared shitless to try. Not one to balk from a challenge, I agreed and did it. Standing in this case was with a walker and two people helping to hold me up. I 'stood' for a minute and a half the first time. Most of the work was done by my upper body and it nearly killed me. I was ecstatic. We did it again later and then pretty much daily for the rest of my stay. I got up to three minutes and was relying less and less on my arms. Some days my ankle hurt too much to stand long and others (especially when on IVIG) I was too tired to do too much, but I always did what I could.
I was also started on a weaning dose of Prednisone at this time. The Prednisone really did help. The little tingling I had in my fingers is all but gone and my energy level increased. I'm not sure if it's the Prednisone, increased IVIG, or both, but whatever it is, I am on the up and up for a change. When I met with the neurologist on Dec 16 he agreed that progression appears to have stopped. He was encouraged by this and the physio improvements. As usual, he did caution that it is a long road ahead. Still, at least it is now a road in the right direction.
When the cast came off I was recommended for rehabilitation at the public centre nearby. I met with the nurse from there and then the Physiatrist who runs the place. I was placed on a waiting list and given the oh so precise estimate of 'likely weeks more than months'. Hmm. This was followed by much confusion about whether or not my place on this elusive waiting list would change if I went home. It seemed everyone I talked to had a different opinion. At the end of the day I did not want to risk anything so decided to stay where I was. I was also reluctant to lose the daily physiotherapy that was starting to go so well.
After a few weeks the tune was changed and all agreed that I could wait at home with no penalty. By this time I was ready to leave. Physiotherapy was still good but Scott and I could manage everything except standing. We decided that I would go home following my last IVIG treatment on Christmas Eve.
This is where I am now - at home, in a wheelchair, waiting for rehab. We are sticking with the physio exercises and I am continuing to get stronger. Next week I start what I call Treatment Phase 3 - I will have home care two days a week while Scott is at work and will need to work ambulatory care IVIG back in the mix. I will also need to sort out private physio again or find out where I am on the outpatient waiting list. All of this assumes no call from rehab... Ah back to the days of uncertainty. Yay.
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