NouTube…

When we were originally told that our son Edward needed a tracheostomy, we wondered how we would ever cope. The idea of our little boy having to breathe through a plastic tube that would be inserted through a hole in his neck seemed so bizarre, so alien to what we had been used to in everyday life until that point. Our first tube changes were done in hospital, with doctors and nurses watching over us to make sure our technique was correct – there is nothing more nerve-racking than having to remove and then insert a tube into your son’s windpipe with an audience!

Now, over two and a half years later, it is just part of everyday life; once a week or so we go through the procedure to remove the old tube and insert a new one. Where we used to have to psyche ourselves up. we now just get on with it as if we were changing a nappy. We do try to force ourselves to follow the checklist that was given to us in hospital to make sure everything stays as safe and as clean as possible. Now the hardest part of the change is keeping Edward still long enough to make sure the tapes are not too loose and not too tight!

We hope and pray that one day we will no longer need to do this and that Edward will be able to breathe normally like any other little boy. For anyone facing the prospect of dealing with a tracheostomy, or for anyone who is just interested, I have posted the following video, in the hope that it will be helpful to someone someday.

 

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Posted in Family Life
4 comments on “NouTube…
  1. kirkykoo79 says:

    It is amazing what you can get used to! We also hope that you will be able to get ‘unused’ to it someday, sooner rather than later. I can’t get the video to work, but I think sharing it with a view to helping other parents is a great idea. xxx

  2. Anton Green says:

    Hi Jude and Hilary. i watched the video today. i do strongly feel that openness and straightforwardness is a Godly quality and very powerful for good. It reduces fear and diminishes awkwardness and normalises. Your patient efficiency in carrying out the procedure impresses itself upon the watcher. that calmness whatever you are sometimes feeling within is so helpful to Edward too. I think it is an important post. there is an echo for me…not exactly the same of course but similar in that when Ed had his ileostomy we faced all the uncertainties around a procedure that invokes levels of fear…but medical advances and Ed’s positive attitude have proved what a blessing that procedure has been. Having access to the experience of those who have travelled the same path (which we did not have) is of very great value. Ed produced an informtion leaflet of his experience and has offered to be available to speak to anyone who wants to. The NHS does not always find time to facilitate this…but it can help people very much to focus on the positives and get through.

    Thank you then for making and posting the video.

  3. Chloe Aram says:

    My little man!!

    I don’t think I’ve ever seen him so still for a trachy change!!!
    I had to search and have a look after our conversation this evening, I’m glad I did!
    I must say, putting this out on the net is a great thing! It will be useful to parents and families in the same situation. I will be telling some families to search this too, as sometimes I think they must feel like the only people in the world in this position. Your calmness and routine just add to the ease of normality and acceptance that can come of something so different from the “norm”. It just goes to show that any family can adapt to any change or circumstance, and that you have one very happy and very loved little boy!!
    I am proud to say I have been part of your journey and privileged to know I will be part of your furture!! 🙂

    Lots of love,

    Chloe
    xxxxxx

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