Feeling a bit lost and unguided again

Hi Travis12 

I do remember you 

So sorry your wife is in so much trouble. 
Im sure these outer tubes need changing monthly. Your wife is still under hospital care so contact her CNS. You can be taught to do it yourself. Does she use a nebuliser? That might help ? And does she have a speaking valve. My stepson has a permanent trach and he manages his own. 

Hi Dani

Thanks for your reply yes she does regular nebuliser use 4 times a day to keep mucus loose as my wife does get a lot of mucus at times, we have done this from when she came out of hospital in December. 

We have had tracheostomy supplies set up with a company who keep us stocked on HME values, speaking valves and cleaning pipes which was very good as it was difficult for a start to get supplies without going back to the hospital for them. The district nurse is trying to set up arrangements so we can get nebuliser masks and chambers at the moment as again we have been going back to the hospital for these as we did not get informed that the district nurse was responsible for this until just recently, so we are slowly getting things in place without having to keep going to the hospital for them which is a big help. 

I think the idea of being taught to change the outer canular would be a great idea if the ENT consultant and nurses would be willing to do this, we will ask when my wife does eventually get the tube changed as it looks as if my wife will be a permanent trache patient, but we still are hoping it may be reversed one day but there as been little change in her swallowing during our last few visits to clinic, and as I said capping off the trache as not been very successful because of mucus blocking her breathing, but we keep on hoping for a good outcome !!.

Will chase up her CNS again

Thanks for your help.

Stephen   

Good luck Stephen....Let us know how you get on

Good evening Travis12, i would say that its a good possibility that the tube could be causing the infections, to be honest, i think your wife should have a speech and language therapist helping you both, i had a trachy three times when i was recovering from head and neck cancer surgery but it was removed once the stoma had healed up and there was no fear of it closing up, i sympathise with you both as i know how uncomfortable they are at times and need to be cleaned a few times a day due to mucus build-up. It may be worth your while asking for a second opinion if you are not happy with how your wife is being treated or looked after by her team. Surely the tube needs changing at regular intervals. Lets hope you can get the answers you need, all the best to you both, take care.

                                                                        Chris