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Brian2001
05-08-08, 11:50 PM
been worrying about aspiration again lately... I know, I know, last week it was something else and tonight he's at it again worrying over who knows what...

Today, during my visit to see V at the NH, I witnessed V coughing a little and making a few throaty sounds. ( this was after a peg feed and the normal side effect of saliva was noticed). I mentioned it to the nurse and also phoned the Dr and left a message, as I knew the Dr was seeing V today at some point.

I rang the NH earlier tonight and was told the DR had examined V and found nothing untoward and no chestiness.

Instead of being reassured I just thought back to my experiences of chest infections over the years(working in heavy industry has left me with chest problems nearly every winter since) and how my Doctor used to miss my chest problems year after year unless I made no attempt to clear my chest by coughing, before my appointment.

As soon as I took this approach I would be taken seriously, given antibiotics and the chest pain would go within the course of the antibiotics!
This lesson learnt meant that come winter, and my chest became tight and painful, I knew how to get it sorted!

So... what I am currently wondering is if V is starting with a chest issue what can I do? ( I have already discussed this with the Dr and after the last hospitalisation for a chest infection I decided that V would not go back in hospital and would be treated within the NH).

I am trying to control my feelings and not over react but yet again here I am challenging medical opinion and possibly facing another ethical dilemma over V's care...

If they are right all I have achieved is taking up their time yet again and they will eventually lose patience with me... ( I am not bothered for myself but crying wolf is not the best way to help V). If I am right they have missed an opportunity to catch the infection early.
I am worn out with worry.-sorry for venting.
Brian.

twamoons
06-08-08, 12:21 AM
Hi Brian,

Can't help you there, probably none of us can, it may have something to do with Vs just being fed, it's very difficult, and another dilemna for you, hopefully it will pass overnight, and be just one of those things, seems every day, brings another worry, hopefully it will be alright tomorrow, let us know,

Twamoons

katiepie
06-08-08, 07:59 AM
Brian,

Hi, I hope you managed some rest. I think if you feel you have a valid point then by all means run it past your doctor. I was wondering if the NH was for general patients or does it cater for HD only? If you feel that the people you leave caring for your wise know their stuff then you should be able to relax.
It could be that your missing her so much your over worrying.

Just a few ideas....HTH...sorry if I didn't

Kath

Brian2001
06-08-08, 08:45 AM
good morning.

Just rang the NH and V had an undisturbed sleep last night so that's a good sign.

Thanks for the kind words late last night
As for yesterdays slight cough,yes, it's something that does happen after peg feeds Twamoons. Seems like the saliva is triggered even tho' no food is in the mouth.(bit like watching someone eating a melon makes your own mouth water).

Hi Kath thanks for trying... I am a bit of a lost cause really... Yes I do think too much about V, her situation and is there something more I can do. The NH is not HD specific but I picked it myself after an intensive search. I trust the staff implicitly and it really does help me walk away after each visit.
The Doctors in the local surgery are a bit of an unknown quantity as I have only known them on and off for two years. They seem ok so I am really trying to like them. Establishing lines of clear communication is a bit of a rollercoaster but being unrelenting in my quest for knowledge will eventually wear them down and they will get to know me better.

So... V had a good night's sleep, I did as well, it's another new day...
Hope today finds you and yours well!

Brian.

myrna
06-08-08, 09:40 AM
Hi Brian,

I think that you get to a point as a carer when all you do is worry about whats next & what to do for the best.
I have just been talking to a friend who is just in that position now too. Its made all the more harder when you don't have 100% confidence in the doctors, so you feel its up to you to make the big decisions about what to do next. And you think of all the what ifs. It consumed me.

Our circumstances with Rikki was somewhat different to any I know of, where she spent the last 7 months of her life vomitting back most or all of her PEG feed so in the end it was decided it would be kinder to stop feeding her & let her go naturally...a decision she had decided for herself years before I panicked & asked for the PEG to be fitted.

As much as I miss her & a thousand other thoughts & feelings have occupied me this past 9 months she's been gone, I don't regret letting her go.
She was suffering too much & the best I/we could do for her was to prolong her life which had no quality any more.
After much thought & many discussions on this subject, I have come to believe that to make that decision for them, is kinder in the long run, if all they are doing is exsisting & not doing that in a good way.

I'm sure when the time comes you will know what the best thing to do for V is & you'll do what you have to for her. Don't be afraid to tell doctors what you want for her, even if that is antibiotics if you suspect a chest infection.

If you want to talk anytime, just PM me.

Brian2001
06-08-08, 09:56 AM
hi Myrna, thanks for those words. Sharing your experiences and thoughts is wonderful.
When, even a very busy person like yourself, offers to support me I feel so humbled.

What a great resource this site is...



Brian.

helen
06-08-08, 10:10 AM
Dear Brian,

Does your wife has a speech and language therapist, or does the nursing home have one that could see her? It might be worth talking to them about your concerns of aspiration if it is possible.

Best wishes,
Helen.

Brian2001
06-08-08, 10:19 AM
hi Helen, yes, speech and language therapist is in the loop and aspiration issues are very carefully monitored when V's daily oral hygiene and feeding is carried out.

Thanks for thinking of us.



Brian.

Di's_bloke
06-08-08, 12:39 PM
Hi Brian,

Like you, I worry and have worried about my wife Di and her feeding problems. I have also posted in answer to some of Myrna's problems that Rikki encountered.

Di had and still does have problems when she is fed, (but they are not as bad or as frequent as they used to be). When she was bolus fed via her peg, in time, she was not able to tolerate her feeds and after 30 mins. or so, she would vomit. (not all the time, but quite often.) She then started to be fed via a pump (as she is now), and she is able to accept her feeds a lot more readily than she was able to in the past. (But there are times that she still does vomit, but they are quite rare.)
there are still many factors that can affect the tolerance to feeds, I was told that the optimum position for the body to accept feeds was 30 degrees above the horizontal position. I also found that if her bowel was clear, that helped her tolerance greatly.

Don't forget that family doctors are GENERAL practioners that have to know a lot about alot of ailments and illnesses; we who have cared for our loved ones know alot about how HD affects our loved ones! If you think your loved one is being misdiagnosed, voice your opinions, nearly all doctors will listen to your point of view and try to ease your worries.

I hope that this helps a little,

Dave (Di's bloke).

Brian2001
06-08-08, 12:56 PM
Hi Dave, thank you very much for your input. I read what you say about GPs and think that you are spot on!

Re: the peg and the optimum angle for feeding... I think we may have been lucky with the feeding regime/tolerance up to now and after a few robust discussions with nurses in hospital I have got everyone onside and sitting V up for feeds and for a good few mins afterwards.


Thanks again Dave and it is nice to meet you!

Wishing you and your Wife well.




Brian.

Brian2001
06-08-08, 07:11 PM
hi Ashlee, thanks for the continuing support! (if only V knew of how many peeps are pulling for her these days! You guys are amazing.)


btw Manx Grand Prix is coming round again... do you watch any of it?



Brian.

Brian2001
06-08-08, 07:52 PM
-live on the course ... cor ! Set a webcam up in the front garden and stream it pleeeeeeesssssseeeee :wink: :wink: :wink:



Brian.
p.s. of course V realises I am amazing... I tell her often enough over the years lol just in case she forgets lol