We got very frustrated today at missing the head doc, again. He's the slippery fellow who nips in to read notes while the patient is in the shower, makes decisions and writes them down in illegible script, and eels off again before anything nasty happens... oh, like, someone asking him a QUESTION, for example.
We asked to see the medical registrar, as my concerns for M's nursing care/para needs were still rising, and M was getting increasingly frustrated at being left without a buzzer, not showered, ignored, and basically given very ordinary care beyond his chest needs.
Medical registrar came, with her medical student. Two angels! They listened, sym/empathised, took notes, answered questions, and agreed that Dr God was a very difficult fellow to work with. Then they made a miracle happen. They took our questions about why M was staying in hospital with NO idea about the diagnosis, proposed treatment, length of stay, some other fancy ideas about the patient having choices as well.. and got
- Yes M could change over to oral antibiotics (and therefore ditch the cannula and manage at home)
- No M didn't need any further physio (he wasn't getting any anyway, ahem) (and therefore not need physio followup at home)
- No M didn't have any lingering nasties in his lungs or anywhere else (and therefore didn't .. need .. to .. be .. in .. hospital?????)
Yes, M could go home. We hastily begged these two angelic women to write the discharge report, order the meds and perform just the one last miracle before discharge: make it happen before tea time because after 6pm it's pretty much impossible to get discharged).
We quickly organised carers, transport, packing etc. And in record time, only one and a half hours since we got the word, M was rolling into a taxi and I was heading for home with his suitcase.
There never was a proper decision about whether M had pneumonia or was incidentally a bit yukky as to chest but was developing a UTI. There never was an answer from pathology about M's throat swab. He clearly responded to the two antibiotics given, didn't develop any further nasty symptoms, and was mostly suffering from extreme frustration.
But we are so very very glad we got out away from the dangers of hospital super-bugs and insufficient para care and wardsmen who broke bits of M's wheelchair etc etc. I do know and understand that nursing care is heavily compromised by lack of staff, resources, rotten pay, questionable working conditions etc. And I also acknowledge that M was on a respiratory ward whose main business is breathing.
But.. FOUR HOURS to get him showered and dressed?
No buzzer for an hour, in spite of him using his mobile to ring the desk and beg for help, three times? (What if he'd choked, or had an asthma attack?? No-one would have known. I didn't sleep that night, thanks very much).
No protocols for: managing a para on bed rest; catheter care; use of hoists/slings/shower chairs?
It's THE major hospital in these parts. M can't be the only para/quad who has needed help. I got very angry when one particularly diffident nurse kept saying 'but I busy, I busy'. And??? Where is the duty of care? Why were our questions ignored? I could see myself having to find the energy to find the person in charge and sit down for a contained explosion about basic care for paras and writing a list of special needs. The medical registrar had, bless her, already suggested M needed special care (a higher percentage of nurse time to patient) and I have no doubt she would have followed through. I note that Dr God didn't address it at all.
I must!!!!! This is the nature of advocacy.
[WHAT exactly do I get from my cat?? - purrsistence, of course!]
M is recovering but the situation at the hospital is very poor in terms of his non-respiratory needs. Yesterday it took FOUR HOURS for the nurses to get him up, showered and dressed. Exhausting and frustrating for him. Later the wardsmen getting him back to bed broke a small but crucial part on his wheelchair. We are so vulnerable..
I fell over on the weekend, needing to sleep and beat my dang sinuses into submission. I think my immune system takes careful note of when there is a chink of time for me to actually stop, and takes advantage. Nothing else explains it. The thought that a body system has functioning sentience is a bit scary tho!
Nothing else to report except a very happy cat thanks to resident me for a few days. I'll have to stop this indulgence very soon. We don't know how long M will have to stay in hospital but are hopeful it won't be too long, as he's continuing to respond well. I stuck a small bomb under the doc this morning about slack physios (they have been seeing M but not doing anything, I pointed out the value of proactive management vs wait-n-see).
I see that in a former life I did something (I do wonder WHAT) which means that in this life I seem doomed to spend lots of time pointing out the bleedin obvious to people. I sometimes wonder if I should just have a tattoo on my forehead which says JUST DO YOUR JOB.
Thank you oh interfering gods of mischief. M returned to hospital in the early hours of the morning today with an egg-frying temp. The fever was reduced fairly quickly, other things took longer. Diagnosis is pneumonia, UTI and a throat infection.
It scared me how fast it came on. But ambos were quick and amazing. The hospital staff also quick and amazing to give first treatments. Now he's waiting, waiting for a bed in the respiratory ward. I've been home to sleep and woken to find I'm not so well myself. Family and friends will be, as always, amazing and helpful and supportive.
UPDATE: M has been admitted to the respiratory ward and is stable. He'll need to be in hospital for several days at least. I'm taking my coffee pot and my book and going home to my cat.
I'm lucky to have a good friend (let's name this friend Sam), who shares (mostly in a very amusing way) stories of the dysfunctional family Sam belongs to. Sam's experience is that although immediate family members are still alive, they are not loving or respectful. But they still make it clear what Sam's role is in their construct of what 'family' needs to mean and what therefore can be asked or demanded or assumed from Sam as part of the family unit. Apart from my emotional reaction to this situation, it raises all sorts of issues about what 'belonging' means, and the strength (and therefore amount of love and pain) that these ties can engender.
We all want to feel we are part of a greater social whole. Our social world begins with our immediate family (usually) and grows out from there, through friends and school and extended family and work etc etc. Usually. But what about our expectations? They tend to grow along with what we witness and experience. So if you come from a loving family and having loving people around you in your greater world, you learn to expect that those people will, in the main, treat you kindly. Will listen, and care about what you say, and generally interact with you as an equal. There will be times when this isn't so, but these situations will be resolved without huge emotional stresses or 'deal-breaking' situations. You are in essence able to be fairly certain of your foundations.
But what happens when your starting point, your immediate family members, have a different way of operating? If their emotional makeup is flawed or skewed or a result of their earlier life experience causing scars? If somehow their model has been flawed and they're not able to pass on the loving, accepting model because they haven't experienced it? Or if, say, they are not insightful, reflective people, or emotionally responsible people, or even people who don't much care what impact they have on others, and whose ideas and feelings don't get scrutinised? We can't all have the good fortune of strong emotional foundations and positive life experience and the inner strength and wisdom to find our way.
My point is that we learn from what we know, and if what we know is something that causes us pain or frustration or anger or something deeply disturbing in some way, what are we to do with it? Our own emotional evolution is something we can choose to think about and perhaps explore and modify. If, say, we are filled with guilt and paralysed by this guilt, we can seek ways to examine the guilt and try to find a more emotionally effective way to live with ourselves. We can make choices about what we choose to carry as emotional baggage, and what we want to make peace with, and even what we want to leave alone because it's part of what makes us feel vulnerable.
When we turn to our family to help us, or accept us, or respect us as equal in emotional status, we are putting our selves in a position of some kind of need. And if those family members are not able to accept or meet this need, we're in a very vulnerable position indeed. Being needy and asking for help is admitting that there's something we can't do, can't manage, or can't understand. Expecting those close to us to treat this with respect and not exploit this vulnerability can be a gamble. If your experience is that admitting neediness is probably going to lead to a situation where you are ignored, exploited, ridiculed or made to feel you are 'lesser' somehow, what does this teach you?
I think you learn, very quickly, to keep your needs out of the equation. If 'belonging' is something you need to feel, you have to change your expectations and understand that you won't get the acceptance and respect you feel you deserve. This is insidious stuff, and in my view can lead to crippling outbreaks of anxiety, feelings of abandonment and low self-esteem. Because if your family doesn't accept you as you are, where do you turn? Many people learn that close friends are safer, more reliable and stronger emotional relationships to participate in. Friends we can choose. Friends can be that unconditional accepting emotional model we all want to participate in.
Sam is caught in a very unpleasant place - wanting both to cut ties and to feel that Sam can belong as the person Sam is. There is much to lose by choosing either position, and it doesn't surprise me at all that Sam can't choose.
In my own explorations of these kind of emotional ties and expectations within the family, I frequently forget that what *I* feel is generally understood; but it may not be the case for all the others. I am as capable as the next person of thinking it's all about me, and forgetting that the others, as close to them as I feel, might have other priorities and other emotional pulls on their resources. I make lots of mistakes but I believe that I at least try to start from a loving, accepting point of view.
It hurts a lot when things don't pan out, and somehow I or we or they end up stumbling over false expectations or simply wrong ideas and assumptions. Like everyone else, I want to belong, and to participate, and to feel that my 'stuff' gets equal time. When it goes wrong, it's awful. Because in loving and respecting my family members, and believing as strongly as I do that we all need our space to stuff it up, sometimes I expect too much or assume the wrong thing or simply get overwhelmed by what's going with me and not be able to see past it.
This is perhaps an apology as much as it is an exploration. Because it's better to learn from a mistake than to just feel bad about it. For me, it's better to think it through and try to understand than to let it go and find that expectations and assumptions are even more off the mark next time.
Brought to you by a day when I was peaceful; then scared, too full and then too empty of adrenalin; and then very lonely for a while.
No perfume was harmed in the production of this post.
.. which some of you might enjoy. I hereby declare I am an occasional Gaga fan, but the confluence of my (quiet) feminism, this day (International Women's Day) and the need to dance to a good beat, leads me to publish this.
For the record, (and to quote myself elsewhere) no major fails yesterday or today. In fact, today I caught up with two friends, bought two things I don't need, and failed to shout at anybody.
Brought to you by the amusement I got scrolling through my new browser screen wallpaper options - they offer images from Dolce and Gabbana, Akiro Kurosawa and a few other big name designers. Not, sadly, Gucci or Prada. Not that I can see, anyway.
The List of Doom took a serious blow today. At last!
Credit union dude helped me work out why the monies was busted. We applied a cyber-bandaid and I should be able to feed the children again in a week or so. Phew!
In other news, the temporary replacement/new/replacement new/new temporary replacement washing machine will be delivered tomorrow morning, pending proper replacement of the new replacement machine. My fears for my festering clothes .. allayed to some extent by the office people's offer to launder them (if and when they ever see the light of day again). At least (says she attempting levity) they'll be really REALLY well-rinsed...
Today we both feel a sense of achievement after a lot of fanging around on and off campus. No-one got lost, wet or combobulated. We dined thanks to me mum, again. Tomorrow whoopee! we will try something called Eating At A Restaurant.
[Brought to you by a minor panic over not having a clean shirt, and some delicious blasts of Gucci.]
.. that my list of Things What Utterly Can't Be Ignored is freaking me out. No detail too small.
And now five visits by assorted Uni maintenance/fixer/helper-type ppl have still not got the washing machine working. The unloadable wet washing from Friday is going to be pretty nasty when the door is finally opened.
I'm tired. Don't wanna try to be funny. Don't wanna go on wrangling care agency staff problems at 9pm and midnight (5 nights out of seven so far). Definitely don't wanna be a stand-in carer for the ones who don't show or don't know what to do. High risk activity for a sore back.
- not a good idea to complain. It just encourages those pesky gods of interference and nortiness.
- not a good idea to complain. Doesn't make anything feel better.
- not a good idea to complain. Gives others funny ideas about me not being made of tungsten after all
- not a good idea to complain. I thought we had a good outcome following the NO rant; then the washing machine died. The BRAND NEW washing machine. Just a little failure-ette; the door won't open. But it's full of washed clothes and (naturally) it's Friday arvo so I fear what festering fabric festiness awaits when a service dude can come (perhaps) on Monday!
- not a good idea to complain. Makes me home-sick for my norty cat.
- not a good idea....
- fresh-baked cinnamon rolls for brekkie ... AND - FBCRFB baked by a bestie! Purrfect.
- TGIF! So I can stop listing for a bit.
- strangely enough my middle name isn't Pollyanna, but I can count a few blessings.. and sit quietly Home Alone for a while. M is out boozing with a dorter!
- sitting down in general. Have I (yeah I know I have) ever mentioned (only a few dozen times) my fabbo Ikea chair? My beloved Poang? Yep, got it at the flat. Am currently jiggling one leg whilst blogging on the other. A form of purrfection fur sure.
- perfume. Tricky choice today. Partly cos I dropped in to Proper Home to apologise to my pusscat and get the mail. She followed me to the bedroom and pointed at my cold, empty bed. I agreed with the sentiment but got (easily) distracted by my collection of gorgeous lil bottles. Settled on ... can you guess??