Worried and confused

[Troubledwife]

My husband went to the hospital sick and was diagnosed with pneumonia and sepsis. The sepsis seems to be gone but his lungs are damaged leaking air possibly from a chest tube or the vent or the pneumonia. Just when I thought he was getting stable he always seem to move into the critical stage. The nurses and doctors I feel aren't allowing his body to heal. He's been put on and off of sedation he's been put on paralysis. I have seen him try to struggle and I feel helpless. He's gotten so many tubes in and procedures done. I'm tired of saying yes to their "experimental procedures" he has 2 unnecessary chest tubes in and the second one does nothing they said it should do its just there and they are telling me it can't be removed although I was told it could be prior to it be put in. Already a nurse is suggesting a tracheotomy which was not an option given by his doctors. I don't want to put him in any more pain than he already is in I don't know what to do

I feel they are moving too fast and not giving him a fair chance

[Luckyone]

Hi Troubledwife,

Having been in a similar position as your husband just over 5 years ago, I had double pneumonia, severe sepsis, MOF ARDS, had a DNR placed on me (which was thankfully removed the next day) on a ventilator for 19days before a tracheotomy could be carried out, all this was topped off with respiratory arrest and 2 cardiac arrests, my wife said I looked like I was plugged into the mains with so many wires and tubes attached to me, she later told me she considered asking the doctors to switch all the machines off thinking I had suffered enough, but I had no idea of the drama being played out as I was in and out of an induced coma for the first 53days of my 3 months in ICU are a complete blank to me as I was living in a bizarre virtual world that at times was very frightening and at other times quite amusing, but at no time did I feel any pain.

It may seem the doctors are carrying out unnecessary procedures which you find upsetting, but often it's trial and error to find something that works, I know from my own experience the doctors tried everything to save my life even when it looked hopeless, even talking to other doctors around the world which resulted in a doctor in America coming up with the answer, so although it appears very distressing to you I'm sure the the ICU doctors are doing all they can for your husband, don't be afraid to ask the doctors questions to put your mind at rest, I would also suggest keeping a diary which will hopefully help your husband in later recovery, you may also find the ICUsteps intensive care guide of help to you it can be downloaded free at icusteps.org

It's also very important to look after your own health at this difficult time.

Bill

[BBDEBS]

Dear troubled wife,

As Luckyone so often puts so very well, we are all walking miracles of trial and error. If they could fix us all the same way they would. Quite often a Trach is a good thing as your husband will look more like himself.

I totally understand how frustrating this must be for you but please know your husband is in no pain and is fighting this illness for you.

Don't give up on him just yet, be strong but be kind to yourself too as Bill says, your health is important. For what it's worth, I had no idea I had friends and family around me until I woke up, so do take time to sleep, eat and pop to the shops, whatever you need to do to keep sane.

Lots of love,

Debs xx

[Troubledwife]

Thank you all I can only imagine what he's feeling like

[Cath78]

Doctors kept changing medications quite often on my partner which at the time was frustrating for me also my partners condition would change in the matter of ten mins . doctors found right meds eventually and he is now thank god on the mend . i have been keeping a diary for my partner and it has helped me alot. You and your husband are in my thoughts and prayers xx

[Phil112]

This is a difficult one to help or suggest options. I only know from my own experience that at least with the trachi in place I was able to be conscious but it is not a pleasant thing to have in place due to continually trying to clear the phlegm. I think you should talk to the most senior medical person looking after your husband and insist on answers and have plenty of questions with you to ask. You need the know the 'WHY's' and the WHEREFORE's

Phil