I arrived home by ambulance around midday yesterday. Had a two hour nap in the afternoon and was ready for bed be 7.30 pm. So much stamina :-)
The last day in hospital was the most hideous I've ever experienced. I had spasms in both feet when I woke up, the doctor came in and ordered an early dose of Diazapam to control the spasms. All was going well and I did an hours work on the reclining bike, two lots of upper body work, two lots of pilates,, four walks on my rollator and two runs in my wheelchair.....boy, was I working hard to be discharged. Then I was half an hour in to getting my copper infusion when my right leg started spasming. My doctor had told me that if I start spasming I had to ask for extra Diazapam immediately. So I asked my nurse for an extra dose. She agreed and then promptly forgot ? about it. An hour and a half later she came back and asked if I still had that cramp!!! In my foot!!!
By this stage I had severe spasming and rigidity in both legs, my back and left arm. I only had limited use of my right arm and that was very tight as well. I asked again for more Diazapam and she said she would take my BP and then ask someone else if I could have more. She couldn't straighten my arm to put the blood pressure cuff on but that didn't seem to ring any alarm bells in what passed as a brain.
By the time she got another nurse to come in I was completely rigid and my limbs were in extension positions, it was extremely painful. I couldnt move my neck and I was having problems swallowing and breathing. The second nurse gave me half a dose of Diazapam which she had to put in my mouth herself and as I couldn't drink, it had to fissile by itself. It did nothing.
I lay in that position and in that condition for another 7 hours, I wasn't able to even press the call button. I ended up peeing the bed. Finally at 8pm a new nurse came on duty, she called the doctor and I was given some IV medication which helped and the rigidity improved enough for the nurse and an orderly be able to clean me up and change my bed and place me in a comfortable position. Because I hadn't been able to eat or drink since 9 am I was spoon fed sips of thickened water to help my throat start to work again.( I had to be suctioned because I couldn't swallow).
Over the course of the night my body finally relaxed and I finally fell asleep.
The next morning my doctor went mad at me for not asking for Diazapam when I started having spasms !!! It turns out the day shift nurses lied to cover their own butts but who would ever believe the patient? Anyway, I was up, showered and packed and nothing and no one was stopping me from getting out of that hellhole. (physio told me that I probably overdid the exercises which brought on the total body rigidity)
So now it's 6 in the morning, I'm in my own bed with my cat lying at my feet and my little dog (Gidget) asleep in her basket next to my bed. The home assist people are coming this morning to start installing ramps and paths for the wheelchair and the builder is coming to help redesign my bathroom. I have a call button installed next to my bed so if I press it, help will be sent immediately. The best part is that I'm in charge of my relaxers now and I can prevent my spasms from getting worse without having to wait for some brainless twit of a nurse to remember a couple of hours later.
I know I'm doing a disservice to all the wonderful nurses out there but it's hard to be generous of spirit when I almost choked to death because of incompetence and downright dishonesty.
I am going back to see my hematologist in a weeks time. My blood tests have started showing blast cells in the peripheral films and that is a sign of either leukemia or the start of progression to leukemia. Somehow I don't think I'm a candidate for aggressive treatment ;-) but I don't really mind. I just want some quality time at home with my pets and my family and friends.
So for now I'm a happy vegemite (Australianism) and once again, thanks for being there when I needed someone to listen.
Your descript of the cat at your feet, and little Gidget next to you says it all. I'm so glad you are getting the house outfitted for you too, and no worries here about the lack of care you received from a nurse and choking, our good nurses will have no offense, and have received some dosies theirselves while in the hospital.
I hope your visit to the hematologist goes well. Thank you for updating us. Nice to see you.
I have finally made it back to read your post in its entirety. That kind of negligence by the nurse(s) is inexcusable. Unfortunately I believe it is really important for pateints to have family or friends come by hospitals for visits, but to also help advocate for care. I think in some cases the care improves when the medical staff knows someone is watching.
I know of many wonderful nurses, including some who are here, and don't mean for the to reflect on the profession as a whole.
Your situation is so difficult to wrap my brain around - that type of rigidity must be beyond awful and I am so sorry this happens to you.
Perhaps you will slow down just a bit on the PT and not wear your body down? Its so hard to gauge when you are exercising what it will feel like in a few hours.
Welcome home and I hope you get to stay there.
I am so glad you are home! Maybe now you can get some rest! I am sorry your experience with some of the nurses were less than acceptable. I am a nurse and I think it's awful. Just remember, you are the patient and you have rights. You are paying for a service. They started implementing a new standard at our hospital and I am sure it is at others and will soon be at all hospitals. Insurance companies are starting to refuse to pay portions of the bill unless the patient is 100% satisfied. You can't have an ok experience, it must be a "wow" experience. There are people employed at our hospital that go around to patient rooms everyday and are asking about their experience with a series of questions. I'll bet you'll start seeing a lot of improvement in health care. That's the way it should be and patients should not expect anything less than 100% satisfaction! Be sure and fill out your questionnaire when it comes in the mail or you are called. They really do have committees that read them.
I hope you get the help you need and keep getting stronger and stronger. Thinking of you!
no offense taken by the nursing community. we too have had lousy nurses.
having been one for years, I have seen my share of crappy ones who have no business claiming they are one.
now, no disrespect meant here, but have noticed the care in country run medical systems such as the UK, the quality of nursing care just doesn't cut it. this comes from talking to foreign travel nurses, and reading tons of posts and talking to friends who have experienced social medicine. As expensive as ours gets, I pray we do not go down that road, even tho it does have good points, I will admit.
Glad you are home and where you can relax and control your meds. You know better than anyone when you need it...............yeah...........and your faithful companions there at your feet to provide comfort..........
I never realized until this last trip into hospital that when you have a severe neuro condition, people (including medical professionals) assume that you also have an intellectual disability and therefore aren't capable of making rational decisions.
I have never been made to feel so helpless and hopeless in my entire life. I have always been a single independent working woman who has never had to ask for or receive any kind of help from anyone. It's such a shock to not only be physically dependent on someone else for basic things as drinking and toiling but to have my free will taken from me at qthe same time was utterly devastating.
Sorry, my hands still don't work very well and I accidentally posted without finishing. Also my apologies for grammatical and spelling errors.
I had a good day yesterday but today, not so good. The difference is that now I'm at home as soon as I started getting rigidity in my legs I could take extra muscle relaxers immediately without having to explain what was happening and then wait for someone else to determine if I needed extra medication.
The builder has been and together we have decided on how the bathroom
renovation is going to happen and luckily, it's the same builder who built my house in the first place so they are going to give me a discounted price. The government agency sent someone and we have decided on where the wheelchair ramp is going and how to make the front gate more accessible. They also do things like come and change light bulbs and repair washing machines, clean gutters etc. So it seems as if help is going to be available if I need it.
Unfortunately, the wheelchair I bought still hasn't arrived and it means I'm restricted to doing very little around the house and I'm not able to leave the house at all at the moment but as I'm not having a good day today I'm not particularly worried about that just yet.
I have already had an hours nap this morning and now I'm going for an afternoon nap. isn't life hard ;-)
I forgot to mention, I was a private patient in a private hospital which I was paying for through my very expensive, top of the range health insurance.
The difference in care seemed to consist of bacon, eggs and hash browns for breakfast on a tray with a teapot and milk jug and a doily as opposed to cereal and a slice of bread on a plastic tray for breakfast in the government run hospitals.
SO glad you are back home, but my heart sank when I read what happened to you at the hospital. What a blessing that you have some good people working with you to help you get your house more accessible. Keep us posted and we will keep praying!!
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