DH is in hospital 100 miles away (2 hrs by car) - How do I get information about what is happening?

[Katymac]

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?

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

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

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.

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

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

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

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

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)

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

Not remarkably well (there's a surprise)

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

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.

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

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

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)

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

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 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

Sounds goo Katy.

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

DD is OK (ish)

I am being silly