I have to say that I am getting bored with this, and I am sure you are too. After this post I think I am going to ignore the hospital and try and focus on things which don't make me weep or swear or both.
I have been up to the hospital and have made some positive strides. Again. However, the energy I was holding to do so has left me with a wooooosh, and I am now limp and lethargic. I am finding it difficult to care about much, though perhaps a weeks sleep would alter that.
I have profuse apologies from the doctors (we got there while they were doing their rounds – registrar and two interns) for causing me pain by keeping me out of the communication loop. Again. They told me to tell the nursing staff that I was to be notified of events as they happen. You know, minor events like the need for a blood transfusion at 2am and its subsequent failure. The nurse I spoke to was defensive in the extreme.' I wasn’t told because they don’t usually to protect patient confidentiality.' 'They didn't know I would want to know.' This from the woman who has seen me twice a day and who I have asked to page doctors so I can extract some information.
Surprisingly I didn't rip her head off and nail it to the nearest coffee table but merely assured her that I had permission. I then went and indicated to the skinny one that on pain of significant unpleasantness he was to confirm that authority when/if asked.
The medical team tell me that they are pleased – well they would wouldn’t they? The blood in his urine is significantly reduced. His haemoglobin levels have stabilised. His blood pressure is within normal ranges - though it was dropping again this afternoon. He can now have ‘free fluids’ as an advance from ‘clear fluids’. Custard and jelly, oh joy and bliss. The stents may come out this afternoon. They were still there at three thirty so I would guess not. He is moving more easily. The wounds are healing well.
And the atypical pneumonia (or perhaps just a chest infection) about which I was also not told is responding to antibiotics. That was the point where I started to lose it, and made it very, very clear to the team of doctors that I resented being kept in the dark and that it was making additional work for them. All the males i(including his high and skinniness) in the cubicle squirmed. Danger, danger - emotional woman at no paces.
They have no real answer about why he had an poor reaction to the blood transfusion. It is being examined in case there was something wrong with the batch of blood. A report will be made (but almost certainly after he has left the hospital is my guess). Since then his temperature has been normal and there has been no loss of consciousness.
Apologies and promises. Again. We will see.
I will be lodging a formal complaint. After he has left hospital since I don't trust them not to indulge in some spiteful payback.
And hopefully this is the last post entirely devoted to medical mayhem. Things of beauty. Silliness. Or both.
Since when is a person's significant other not kept in the loop for confidentiality purposes???? I find that outrageous, unless of course SP asked them to keep you our of the loop, of which I am sure he did not.
ReplyDeleteA formal complaint is certainly in order.
Please rest up now, you need to keep well too.
Healing and calming thoughts and wishes speeding across the Nullabor to you and SP. xxxxx
Kskka: Healing and calming thoughts are needed (for me) and have been gratefully received.
DeleteYou can write anything you want to. This probably helps you to vent to us. We are all there for you.
ReplyDeleteTeresa: Not quite anything. A post full of the obscenities which are in my head would probably get me black banned by Blogger.
DeleteI have never heard of a spouse not being informed of what is going on. That is wrong. A reportable offence for sure. Please keep writing. Writing keeps us sane.
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Flowers for you! xo
Birdie: I adore my clever bunches of flowers. Thank you. I am not certain that even writing could keep me sane at the moment.
DeleteNot communicating even vaguely satisfactorily with you is unforgivable: that nurse deserved a lot more than you gave her!
ReplyDeleteI hope that this is finally the end of the shoddy treatment of you both!
Kath Lockett: Fingers crossed that things improve. And yes, the nurse did indeed deserve more, but once I started I don't think I could have stopped. Being banned from the hospital would not help the skinny one or me.
DeleteI do so hope you are through the worst of it. I am totally flummoxed that they have not kept you in the loop. Please take care of yourself now, pretty please? Wine o'Clock is whenever YOU need it.
ReplyDeleteDJan: You are a temptress. It is a little after six in the morning. Wine o'clock? DJan said I could...
DeleteIt's good that you'll be following this up with a formal complaint (as horrid a process as that is!). And you're wise to do it once his life doesn't depend on those spiteful inept people anymore.
ReplyDeleteSomething wrong with the batch of blood is possible. But I still suspect it was human error. Especially when they've been so inept about everything else. But you'll never know the truth.
Speaking of which.... I don't know how records requests work there, or if you can get your records, but when I was almost killed by a hospital here and had to do battle afterwards, I was told by someone in the know to get copies of my medical records ASAP after discharge and before filing anything. It is not unknown for them, I was told, to go back and change the record if they smell a complaint or litigation in the air. And when you do, if you can, make sure you get the full surgical records and hospitalization records, not a summary. It was quite an eye opener when I saw mine! For instance, nobody had mentioned to me that they seemed to have lost count of the sponges (or something) during the surgery and that I had to be x-rayed before they sewed me up so they could look for it/them. But it was in my records.
On the bright side, you aren't in the U.S. Here, you'd not only have them rummaging around looking for their sponges, but then you'd risk bankruptcy afterward when the bills started arriving. And they'd bill you extra for those lost sponges, since you used more of their supplies. (That's actually not a joke. When a couple of inexperienced underlings badly bungled my IV and had to do it multiple times due to their incompetence, I was charged extra for each bungled attempt. After all, someone had to pay for those extra IV supplies.
Hospitals...@#$% abattoirs staffed by bungling butchers. Unfortunately, yours seems to have more meathook-wielding incompetents than the usual.
yes, at least she isn't going through this in the U.S. You'd be signing your house over to the hospital by now and living in a homeless shelter, where Christians would come to convert your immoral heathen self and conservatives would stop by to tell you what a low life loser you are and yell at you to get a work ethic.
DeletePaper Chipmunk (aka Ellen): Quite a lot of what has been pissing me off has never made it to his records. It has been sins of omission - not telling the kitchen he could have more, not telling me ... However, thank you - I will certainly ask for his records (if I can). He may have to - which will leave me stymied as he will not want any more fuss. Hiss and spit.
DeleteStrayer: At least all of this nightmare is free. A small consolation I was thinking, and then I remembered the horrendous charges I would have faced in the US. You have one very scary health system - and I say that knowing ours is very, very far from perfect.
DeleteStrayer... so frighteningly true. You left out the part about the hospital also being run by a religious order. The place that almost killed me is a Catholic hospital. They have a monopoly on hospitals for more than half of our isolated rural county. You get to have a crucifix over your bed and have your care guided by the Catholic Church as you are bankrupted.
DeleteEC... depressing. Isn't it horrifying how much of their malfeasance and ineptitude doesn't even make it into the record. I wish you could make him understand that it's not about making a fuss for him, but about bringing attention to serious ineptitude for the sake of those who come after him.
I know that look they are giving you - I got the same when my mother was in the hospital the last time. Keep at it and yes, take care of yourself.
ReplyDeleteLynn: Mouths like cats' bums all round. And yet I didn't make them a fraction as uncomfortable as they have me.
DeleteYou write about whatever makes you feel better. We're here for you. It's so wrong that we are at the mercy of bungling hospitals and inept, overworked staff. The few times I've been in one, I've run out the door the moment my legs would carry me.
ReplyDeleteWhat paper chipmunk said is so sadly true. The ER once started to give me a drug that I had an allergic reaction to. Several years later, there is absolutely no mention of anyone ever giving me that drug in my records. Only my husband and I know of my reaction to it. Scary.
Perhaps you could have the second surgery at another hospital when the time comes? Or a face-to-face meeting with the Doctore beforehand to outline your expectations? I feel so bad for you, having to deal with all this.
Go have some wine and count invisible sheep. ;)
Laura Eno: The arrogant toad who operated on him does not operate in other hospitals in town. I DO NOT like this surgeon, but himself does. Sadly I think the next surgery will be here too. It is very close to home which helps non-driving me too. AND, my eldest brother rang last night (from another state) and was telling me of a very similar debacle on the other side of town. Aaargh.
DeleteI found myself last night working out how to make those invisible sheep visible again (worried about zombie sheep you understand). I need to get a life.
Good advice from Paper Chipmunk (aka Ellen) about getting the records first. What an unbelievable debacle. And don't worry about us: Write about whatever helps you through this infuriating and worrisome time.
ReplyDeleteHoping things improve very, VERY soon.
Ms. CrankyPants: I need to adopt your name as my own. Who am I kidding. I am CrankyPants personified...
DeleteFor many years I worked in hospitals and it is common for folks to have reactions to blood transfusions, a small allergy, that is why the temperature is taken at close intervals especially at the beginning of the transfusion and if the temp rises the transfusion should immediately be stopped. It doesn't necessarily mean the blood is bad but that the person receiving the blood may be allergic to that particular blood, another transfusion with the same type blood but from another person and there may be no reaction. These circumstances are very debilitating, take care of yourself and get all the rest and relaxation you can. Keeping you out of the loop is just plain wrong. Being persistent with the hospital staff is all that you can do, the squeaky wheel gets the grease so to speak.
ReplyDeleteLinda Starr: Thank you. I am fascinated to hear that blood ain't blood, that someone can react badly to their own blood group. Which eases some of my fears a little. I am a very squeaky wheel at the moment.
DeleteHospitals are rarely a good place to get well! It's good that you're being a powerful advocate for SP's well being - just try not to make yourself sick with worry and stress in the process. Hope there's no more drama and that he gets to come home soon, where the real healing will take place!
ReplyDeleteLaloofah: You are right - but naive me thinks that hospitals SHOULD be a good place to get well - or to at least make a good start.
DeleteHmm...you may want to hold onto a bit of a good "mad." Store it in some secret recess, but be ready to haul it out and hurl it at a moment's notice. You might want to add a cane to your repertoire, too. Thumping them mightly at every punctuation pause really holds their attention.
ReplyDeleteJoanne Noragon: I am sure that I can continue to channel the pyscho bitch from hell whenever I need her. The cane is an excellent idea though - thank you.
DeleteStand strong. This doesn't need to be your last post about this - you get to vent! I think someone else here said something similar, so heed my (our) advice. Write what you need to in order to keep your sanity. Sending healing thoughts your way. Go have another glass of wine.
ReplyDeleteKathleen Cassen Mickelson: That is two of you recommending more wine today. I like it. I think sanity has already left the building.
DeleteI think you are amazing! To be able to keep your sense of humour in the face of all this..."Danger, danger---emotional woman at no paces!" Love it. Fingers crossed for all of you.
ReplyDeleteMolly: My sense of humour is more integral to me than my skeleton. You should have seen their faces and their shoulders tightening up, in stress and horror. Serves them right.
DeleteComplain when you need to...we're here for you. Personally I'd be 'chewing nails and spitting rust' as my mom used to say.
ReplyDeletemybabyjohn/Delores: Thank you. I am already chewing and spitting.
DeleteArgggggggg
ReplyDeleteKaren: And so say all of us.
DeleteI hope SP will continue to improve and you will be informed what is going on, as you should have been all along. And as others have said, write about whatever comes out your finger tips! In a very real way you are educating others who may need to know about patient advocacy before they find themselves or their loved ones in a similar situation.
ReplyDeletejenny_o: Thank you. I am quite surprising at the improvements that are visible in the smaller portion's health. It seems that they must be getting something right. I am more than a little frightened at the thought that my angry and distressed rants could be seen as educational. Scary.
DeleteWhat the hell is the problem down there that they thought they could dispense with you?
ReplyDeleteHere, you have to sign a form for other people (including your spouse) to know what's going on, so anytime I see a new doctor, I ask for the proper form. Anytime, I go into the hospital, I do the same.
Snowbrush: We don't seem to have that form here - and it has never been necessary (even in this hospital) for us before.
DeleteI suspect if we did have it, life would be easier and less of a battleground.
And of course they are not going to dispense with me - whether they thought they could or not. So there. Not feeling very adult this morning.
There are no words except - 'nailing her head to the coffee table' sounded quite appropriate.
ReplyDeleteWendy aka Quillfeather: Tempting at least. Very tempting.
DeleteYou have the patience of Job, EC...I would've ripped a few heads off and had them firmly nailed to a table or three!
ReplyDeleteDon't apologise to us for writing of your hospital experiences...vent as much and as often as you like...I won't be offended or annoyed...and I'm sure others here won't be either. :)
Lee: It isn't patience so much as the fear that once I start ripping heads off that I may not be able to stop...
DeleteFor your sake, I hope you don't have to go through more b.s.!
ReplyDeleteRiot Kitty: Me too. No dramas this morning, which is a very nice change.
Delete"Patient Confidentiality" be damned when it comes to partner/ spouse/significant other. There should be far more education about the Privacy Act, if not the requirement for nursing and medical students to actually read it and write an essay on it. As it happens invoking the Act or the principle of patient confidentiality becomes the lame excuse, if not defensive reaction, in these sorts of situations. Of course it should be respected... but with the thought that the patient does have people who need to know.Instead it is the banal excuse... I was just following orders, operating within the terms of the Act etc. You should be kept in the loop. That is all.
ReplyDeleteChristine: She was sooooo defensive. She knew she was in the wrong, and just couldn't bring herself to say so. On his records is my phone number and my mobile number. And just why would they be there if he hadn't authorised sharing of information? Both ways? Hiss and spit.
DeleteThe fact that he has no temperature is very good news.
ReplyDeleteStarting Over, Accepting Changes - Maybe: It is. Greedy me wants a whole lot more good news.
DeleteGreedy... Not
DeleteChristine: Thank you.
Delete..."patient confidentiality"?!! What a load of BS! They're covering their arse. There seems to be issues with communication, to put it mildly.
ReplyDeleteNext of kin/spouse is privvy to whatever the patient undergoes.
Yes, I'd be waiting till your SP is safely home before lodging a complaint - you really never know, and that's a shame, but their track record is pretty rubbish.
Take care of you too as stress effects can hit at times when we least expect it.
Wishing you strength :)
Vicki: I will most definitely be complaining. And yes, stress hit me with a wallop yesterday. I gave up and went to bed shortly after eight. I still feel like death on a stick - but better. Much better.
Deleteoh my poor dearest friend, what a struggle :(. I am familiar with how awful can hospitals be. I wish you peace and good health for you and your dear one...it will turn out alright you'll see...just take it easy, as easy as you can. Love.
ReplyDeleteunikorna: Thank you. Fingers and toes crossed...
Deletewhat the hell is the skinny one playing at Sue? much love to you and the smaller portion darling. xxx gem
ReplyDeleteGemma @ My Big Nutshell: He doesn't do hospitals and medical procedures well. If there is a complication to be had - he will have it with bells, whistles and a big bow. Very stressful for the interested onlooker.
DeleteDear EC, I don't have any words. I'm sitting here thoughtless because of all this confusion and this failure on the hospital staff's part to recognize just how lame their communications are. I do so hope you can find beauty amidst this dark and a large stein of silliness. Peace.
ReplyDeleteDee: You know me well. Silliness there is, and beauty there is. Thankfully.
DeleteSorry I didn't make it here yesterday. I am quite speechless thinking about all you and the SP have gone through. I second everything Kakka said on Friday.
ReplyDeleteI think Ellen's advice re obtaining SP's medical records very sound. I feel you can do so under freedom of information rules. A complaint does need to made, even though I too dislike that type of thing. Keep well and I am so glad you can still smile. xx
Mimsie: It is not necessary for you to apologise for not getting here every day. Not necessary at all. I know that the smaller portion can request a copy of his medical records, but I am fairly certain I can't. I am also almost certain that he will want to let 'sleeping dogs lie' - which makes me very angry indeed. We will see.
DeleteMy dear friend,
ReplyDeleteI apologise for taking so long to get here. And thus you get apologies, promises, lack of information or confusing information. The added stress is something neither one of you need. I'm hoping things will vastly improve.
Thankfully, in my ongoing hospital saga, after actually finding out what one appointment entailed, I have received excellent communication, respect and understanding from the NHS staff. I just wish I didn't have to go on my own. I hate that part.
Peaceful, positive thoughts, your way,
Gary
klahanie: As I said to Mimsie - apologies for getting here late are not necessary. It is my privilege that either of you come here at all.
DeleteI am very, very happy to hear that your hospital treatment was much better than ours - you have more than enough on your plate already.
Sue...
ReplyDeleteSending love and hugs from snowy Minnesota.
Xxx Kiss. thinking of you-- Always.
My Inner Chick: Thank you. Lots.
Delete