Wednesday, 20 June 2007
General Trachy Topics
Hi! If anyone has any comments on day to day living with a child with a tracheostomy, please leave them here. This can include anything from washing hair, getting around the shops, accessing school/nursery, travelling, obtaining supplies, types of tubes used, velcro or tapes, respite provision, blue badges, affects on siblings, speech therapy, feeding issues, trachy training for carers, decannulation...........basically whatever your experiences are - good or bad - will be useful for other families caring for a trachy child. ACT hopes that no family should feel they are having to struggle on alone; the whole point of membership of ACT is to try to help one another and find out where things work well and then ensure that this can be replicated where things do not.
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8 comments:
PHOTOS URGENTLY NEEDED BY ACT TREASURER!
Hi folks can you help me? I am attempting to write an artcle for publication in a Medical ENT Journal & need 2 or 3 (close up)digital photos of children with a trachy who WILL NOT be identified other than their first name, age and reason for trachy EXAMPLE: Baby Sasha 18mth Traceomalacia. Children shold be between 3mths- 18mths/ 3yrs-5rs/ 7yrs upward. I also need your consent for the photograph to be publihed (if article is accepted) BUT TIME IS SHORT .. JUST TWO WEEKS ! if you can help you should email the photos stating age and reason for trachy and your consent for publication to: support@actfortrachykids.com.
Regards
Terry Foster
ACT Treasurer
Thanks very much to Julie and to Kate for giving their consent for ACT to use their photos to be used within the article written by Terry. It is very much appreciated!
do we get to see the article?
Just some info about travelling with a trachy. We have stayed in the uk for holidays since Sam has had his trachy (we have an estate car with roof box so can easily manage all the supplies). However, if your child is on oxygen (as Sam is) make sure that you confirm with your holiday accommodation before you set off that any supplies have been delivered. we arrived on holiday last August Bank Holiday weekend to find an oxygen concentrator and several bags of nasal cannulae. NO portable cylinders (and of course you can't transport loads of oxygen) I called the oxygen supply company who "didn't know he had a trachy" and ended up having to call my local community children's nurse on call. they delvered on the Sunday - the wrong type of cylinders - the minimum oxygen delivered was more than Sam needed. then they tried to give us a conserver, which is apparently dangerous for anyone under 7 and anyone at all with a trachy. We finally got the correct cylinders by the Wednesday and we were only there for a week! I'll definitely be making some calls before I leave this year.
I would just like to add my own thanks to those of Amada's, to the parents of Josh,Sam Angus and Kiera for allowing me to submit the photos with my article.
As far as the article is concerned I have been given no guarentees it will actually make it into print it depends if it makes the grade but I live in hope. As far as seeing the article goes, possibly not!
Hi! We have been notified of a problem with velcro trachy tube tapes, specifically a set of Dale 240 blue tachy tube holders. A 14 year old awoke to find the tapes had come undone whilst he was asleep but luckily his tube had not fallen out - he held the tube in place and called for help, averting a potential disaster. ACT has had comments from some Consultants that the security of velcro tapes compared to the traditional cotton tied tapes are not as reliable. It would be interesting to have the views of other parents on the use/reliability of velcro tapes, or indeed a professional's viewpoint. Please feel free to comment!
we were advised not to use velcro tapes at all as there have apparently been several incidents at GOS with tapes coming undone and the tube actually falling out.
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