DD is OK (ish)

I am being silly

Sounds goo Katy.

How is he doing? How are you and DD doing?

My dad has written him a letter to sign:

I would be very grateful if you would ensure that my wife, KatyMac, is given up to date information about my treatment and is permitted, as appropriate, to discuss it, with my doctors and medical advisors. The situation is complicated to communicate and discuss on a second-hand basis and I value her counsel and need her full understanding of my treatment and condition.

Hopefully that will help

stanausauruswrecks is spot on - you need to get your husband's consent to share info with you documented in his notes. Without this, staff should not be sharing information with you. I know that sounds harsh but you would be amazed how often people ring up pretending to be relatives when they are not (and, even if you are the next of kin, it is still your husband's choice whether you are given any info). The nurses could lose their jobs if they gave you information and your husband then objected.

Also agree with stanasusauruswrecks about contacting the consultant. If you speak to a doctor on the ward it will be some random junior doc who probably doesn't know your husband and will be winging it.

My Godmum has pointed out that combined with the upset of being in hospital, the chest infection & the antibiotics, and DH's particular personality, DH will be struggling to understand the doctors & what they tell him

She feels I must point this out to the staff as he has a potential borderline undiagnosed learning difficult

Me too

He had 2 weeks of IV AB last July (funnily enough) and that reduced his infections from 10-12 a year to about 6.....but the 6 he had seemed worse (if that makes sense)

Causing little or no symptoms .

I suspect from what you have said they are going to treat until he is clear from chest infection....kepp him under obs for a few days and see if his respiratory function declines when he is off ABs - as the ABs he is on are likely to knock the mycoplasma back a bit he will probably be better than ever for a few days (which I think you have said has happened in teh past?). So they will probably either

See he is great after ABs because ABs have kncoked back mycoplasma...send him home and he will start to decline for a few days...they will deny it was the mycoplasma...you start another circle

OR they will keep him in a bit longer so he can get over the post AB peak and start declining again...see he needs mycoplasma treatment and you might finally be on a more permanent road to improvement.

I know that it means he may be in longer...but for your longer term sake I hope it is hte latter

But apparently because it is causing little or no symptoms they might not treat it?

I glad you are making some progress.

I can give you the diagnosis regarding the mycobacterium....if he was tested positive for it 3 times and hasn't been treated (for 6-18m as we have discussed previously) then it is still there.

Mycoplasma doesn't go away on it's own.

Chin up. Try and be positive for DD. try and be positive for yourself. He is in hte best place and if they get him sorted properly you will have you DH back to do the laundry, bins and rushing around.

I am really sorry, wish there was something I could do/help.. always a listening ear.

Not remarkably well (there's a surprise)

Oh Katie I am very sorry lovely.. how are you holding up?

They are treating for the chest infection (7-14 days of IV AB)

Then they will monitor him (for some unspecified time in hospital) to see if the Mycobacterium is still there (how?? it takes 6 weeks to grow)

The scan he had a month ago is fine (which I knew)

How confusing, do they at least know what they are treating?

Finally spoke to a doctor - not much news but at least I know now

Katy, how frustrating for you! Roll on the weekend.. I am very sorry to hear that you still don't have any more information and trying to keep all the balls up with work etc etc. Hang in there - thinking of you

I emailed PALS & they are intervening with the nurses on the ward to ensure I find out what happens

He was first diagnosed with the mycobacterium in February, then he had to have 3 positives for it before they would treat it. He has had the 3 positives but they 'seem' to be treating him for something else

I am so confused

Here's what I would do...
Firstly make sure your DH has it documented in his notes that he has given his consent for information to be passed on to you over the phone/face to face/ via email. As someone mentioned earlier, hospital staff shouldn't be giving info out about patients willy nilly.
When you speak to anyone on the ward get their name (always makes people behave that bit more "professionally" I find (and before I get flamed by any nurses, I am one ), find out who is the named nurse for your DH, and speak to them. They should know what the plan of action is for that day. Find out what time the ward rounds are held at, and ask if it's possible for one of the doctors to give you a ring after it has finished.
Deffo speak to the consultant's secretary,lay it on thick about how hard it is having DH away, how much the DC are missing him. Will help in getting the consultant to speak to you.
Re the email, I would also add the difficulties you have in getting to visit.

One of the reasons that they haven't got much info for you is that they will only now be getting results back from sputum/blood cultures - usually takes 48hrs to get a result from these, and it can be up to 5 days if they're doing extended cultures. Hope you get some good news soon.

ah, i have this with my mum - total mental block whenever she talks to the doctor!

I get to speak to DH all the time - he just doesn't understand what is happening/remember why

I think the email is fine. It is part of the doctors job to communicate treatment plans to family memebers, either directly or via a nurse. I cannot believe that the people actually treating your DH don't know what is going on.

So frustrating for you. Have you managed to speak to DH at all?

Is this a reasonable email?

Or is it a bit snippy?

I spoke with someone yesterday about my difficulties in obtaining information about the treatment of my husband, MrKatymac . A nurse (sister) from the ward very kindly rang to discuss what is happening with regard to MrKatymac’s treatment and promised a doctor would ring me with additional information.

I understand that doctor’s are very busy and wondered if there would be an easier way to obtain information which would involve less interruption to the doctor’s busy schedule.

However I left my husband on Monday afternoon and it is now Thursday without any real understanding of what his treatment is for. Is it possible for someone to contact me and tell me what he is being treated for (a chest infection or Mycobacterium) how long the treatment might last, when I might expect him home. I understand all this information may not be definitive, however I am getting more & more distressed as I simply do not know.

I was asleep - sorry

Anyway I will try today

Yep also good idea,usually after 11PM/midnight there is a lull,sometimes,barring any emergency situations.

You could try phoning again now and asking the night staff. They might have a bit more time to look at his notes.

Take care Katymac,it is a rollercoaster.The only way I cope is taking each day at a time.It is hard being the one dealing with it all,the dcs,the bills,the mortgage,work,the oh illness and trying to keep it together xxxxx

I am frequently on mn if you want to offload and are having an aaaarrrghhh day xxxxxxxxx

Thanks

I'm off to bed to settle DD down

Thanks everyone

Re washing/ironing.

When dp in hossy and I am working I iron the minimum,usually just the school uniforms and my work uniform.I hang a lot of stuff on hangers to dry.I guess no one has ever died from having un ironed clothes and if people turn theirnoses up they are obviously sad feckers with nothing else to do with their time.

Aww Katy,I know how you feel.Dp was hospitalised for 8 months and has frequent admissions usually with a temp/uti and has had about 12 readmissions in the past 2 years.It is very hard.Ds misses him loads,he is 5.Even dd who is 3 and learning delayed,seems to relise when he is absent.She keeps going "Dadeeeee?" (one of her few words) in a questionning tone if he isn't there.Thank god for mn else I wouldhave goe nuts!Hope your dh is ok xxx

OK.

Wear the same clothes for 7 days and there will be no washing (possibly not eh best idea in the this weather [pongy] - so I guess you had better wash it. No need to iron it though. Fold it/hang it and put it way. The creases will drop.

No solution for DD though....

I don't half miss him

He does the washing, hangs it out, takes it in & then irons it....finally putting it away in cupboards

He takes the rubbish out & brings the milk in

& he runs around after DD

DD is so missing him & is still wandering the house all weepy

Oh good idea IH.

Contact the consultants secetary in the morning and explain the circumstAnces.

If you go through the hospital switchboard they will be able to connect you with his/her secetary.

Hope you get some info soon.Can sympathise,as when dp in hospital it is often difficult to get info without being physically present and badgering docs.With nurse head on,oftenonly minimal info can be given over phone,but obv youer circs mean it is difficult for you tio visit.I would go to consultant visa sec for advice.Sorry,didn't think earlier,brain mashed from nights!Hope your dh is OK X.

Actually they haven't actually said they won't give me any info, simply that they do not have any info to give me

So they are treating him for some unspecified reason

But they haven't said that. They haven't said she can't have info - they just won't give it to her.

Katy needs info by phone if she cannot get to teh hospital for 6 days, and considering how poorly her DP is I don't think it is unreasonable to get a Dr to talk directly to her - even if her DH has to give permission.

I thought I would email PALS as I assume they have a service level agreement for responding.

But I guess the phone is the way to go

I hadn't thought about contacting his consultant - but I will

Also his asthma nurse has said the surgery will contact the hospital

At our hospital they will not give info over phone under any circumstances. Could you not get dh to ask to speak to dr and relay it back to you. Must be really stressful for you and the rules should be bent in these circumstances, but that is nhs for you. Hope you get answers soon

I think what I would do - and I know that you are finding it hard, frustrtaing and emotionally challenging not being able to see your DP and not knowing what is going on.

What i think that I would do is the following:

1. Phone the ward once more tomorrow morning and ask how he is, what he is being treated for and what his treatment plan is. Be clear ion what you would like to know. Be clear that you cannot get in to see your husband, and that the telephone is your only means of communication. If they can't tell you ask them to get someone to call you back by the end of the day. If you can't communicate with them ask if there is someone else available that you can talk to on the ward.
2. Assuming they haven't responded by lunchtime. call again and ask the same things. If they can still tell you nothing ask them to send you information in the post on their complaints procedure (might spur them into action).
3. Phone PALS again. Ask them how you can go about getting this info - being really clear that you have had no information about treatment plans/diagnosis etc. since Monday. Also ask them about the complainst procedure.

In addition/as an alternative can you call his usual consultants secretary direct and ask her to get the consultant to call by teh end of the day?

I know it is a pain. I know you shouldn't be doing this...but fight (if you have the energy and you should get there).

KM how frustrating and worrying for you! Can you keep harassing them, though I am sure you've thought of that. Either way, I am very for you and DH. Thinking of you both x

Well he is either being treated for recurrent chest infections or Mycobacterium

The doctor hadn't decided when I dropped him off on Monday

I guess I was hoping someone would know

I am bit at the CN not knowing why your dh is on AB,surely he has notes available to read!

It MAY be that they do not want to give too much info out over he telephone,in too much depth,but at least the reasons for being on ab should be known.

I would keep pestering them!If you ring up enough I am sure they will be able to find somebody to provide you with some information!.

for you! What is racist about expecting someone answering the phone on a hospital ward to speak fecking english??? I have no problems whatsoever with foreign workers. But every worker has to be up to the job and communicating to patients and patients families is part of the job, if your English isn't up to it, then you aint up to the job - or might it have occured to the woman to pass you to somoene who knew what was going on.

You have to pester, i appreciate that the wards are busy, but you have a right to know what is going on. Ring and ask to speak to someone who is dealing with your husbands case. The ward sister may have only just come on duty. maybe the anti bs are being given as a precaution against infection and that they don't know exactly what infection he has etc as blood results might not be back etc.

So, ring up, ask what blood results they have, what other tests he has had and why. Ask them what their plan of action is. They might be limited of course, pending results but at least if you know what they are planning to do, you can sleep better tonight.

Really hope your DH gets better soon x x

I am in touch with DH - but he doesn't really understand what is going on (he gets upset and confused if I press him for details)

Well we are going on Saturday - but I work full-time (50 hrs a week) & I can't drop everything just to pop in for a chat much as I would like to

Does your DH have a patientline phone by his bed? Could you ring him direct? If not,

Ring the ward again, ask to speak to the sister, say you are aware docs are very busy but you really need to know what is going on with your DH and can she give you an idea of when doc will phone.

omg can you not visit him at all?

I phoned the ward & the lady I spoke to didn't understand me

Phoned PALS (explained that I couldn't nderstand the person I spoke to/she couldn't understand me; they then accused me of being racist - I suggested that a person married to Jamaican might possibly consider that accusation insulting) who said the Sister on the ward would phone me

Sister phoned me & said he was on anti-biotics but she didn't know what for but a doctor might phone me

No doctor has phoned me

I have no idea what is going on.....what is the most effective way to find out?