Trachy Tapes

Just wondered what type of trachy tapes people use. We used trachi-hold by Kapitex until about 18 months ago when we had an accidental decannulation. Since then we have used Posey ties which are great and fasten at the side rather than the back and are a lot more secure. The problem now is that the small size are getting a bit tight, and the the next size up are massive(too big even for me if I had a trachy!). I've contacted the manufacturers to highlight the sizing problems, but, in the meanwhile, does anyone know of any side fastening trachy tapes? Not too keen on moving to the non-velcro ribbon type, which some people seem to prefer. I realise there is always a greater decannulation risk with the tapes, but then Dominic always has someone with him and is on a sats monitor when he sleeps.


Laura

Well Child Campaign

We have received some information from the organisation Well Child which we are happy to pass on as it may be relevant to some of our parents. Firstly, they are running a campaign called "Better At Home" which aims to get more specialist Community Children's Nurses with the right Care Packages for children so they are able to get home from hospital more quickly. The main aim of the campaign is to try to reduce the number of children and young people with long term complex healthcare needs who stay in hospital for months and in some cases years. Well Child are asking for parents to contact them (or via ACT) to give them their experiences of how long they had to spend in hospital before being allowed home. They need to identify how many children stay in hospital long term and what would be needed to help them get home. So if you feel you could support the campaign please contact Well Child on 0808 801 0330 to speak in confidence to one of their nurses on the free Helpline, or email campaign@wellchild.org.uk

Well Child are also promoting"Helping Hands" which aims to make a difference to families caring for a sick or disabled child by completing practical support projects such as a Garden Makeover or Bedroom Refurbishment. Helping Hands use volunteers from local companies and they will give up to 3 days' practical support to complete a project. You will need to complete an application form and provide photos of the potential work and provide a note from your child's GP or paediatrician to confirm his or her condition and the potential benefits of the project for your child. Please contact the Helping Hands Project Manager for more information on 01242 808 346 or email helpinghand@wellchild.org.uk or see their website www.wellchild.org.uk/helpinghands

ACT is pleased to support Well Child in their work with helping families.

Eating Problems

Hi - I was wondering if anyone had any experience with problem eaters? Luis is 17 months and has had his trachy since he was 4 weeks old and has never had much of an appetite. He has been having overnight ng feeds since he was 9 months as his weight had really tailed off, but even though we can (just about) maintain his weight this way, I can't help but think that having another 'obstacle' can't be helping his eating. He loves food but he won't swallow anything, he will chew everything put in front of him but then spit out. His milk is his main source of calories but if he has 50ml in a sitting we consider it a success. It's such a huge thing for us, I know most parents worry about their child's eating, but I find it really difficult to relate to anything in the 'normal' baby books - they don't do a Toddler with Trachy Taming book! Can he feel the trachy when he swallows? Is it the ng tube? Is it the stressed out parents (although we weren't too stressed until he stopped swallowing!)? Or is he just a fussy (non) eater??

Despite all this, he is a very happy and otherwise healthy little boy and has plenty of energy - somehow. If anyone has any experience in this area it would be much appreciated.

Many thanks - Helen x