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

Vocal Cord Palsy

Do you have any experience of surgery for Vocal Cord Palsy/Paralysis? ACT would be very grateful if you could share your experiences on how successful surgery has been and how it has affected your child's voice, or if you opted out of surgery rather than risk the voice quality. We have other families who would really find your views helpful! Please email ACT at support@ACTfortrachykids.com phone 01823 698398 or write if you think you could help. Thanks!
Amanda
ACT Secretary

Holiday Ideas

Keep forgetting to logon to this forum. Anyway, I've just read the posts about holidays and wondered if this would be a good topic for the December newsletter. Members could provide suggestions/ recommendations on places to holiday with a child with a trachy. We had quite an unstable first 18 months with Dominic and chose to wait until he was oxygen and CPAP free before risking a holiday - which we did for the first time last month.

So, to start the ball rolling.....

We went to Centre Parc's Sherwood Forest, we chose this as it is quite near a good teaching hospital in Nottingham. Centre Parc's were very helpful and have a special booking line for people with disabilities. As we were unable to take the cancellation insurance due pre-existing medical conditions Centre Parc's also stated that if we needed to cancel we would be able to rebook. This was tested when Dominic decided to get RSV (in April!) meaning we had to rearrange our original week to June. We were charged to move the week (£30 I think), and had to pay a bit more as lodges in June are more expensive than April, but at least we did not lose all our money either. In hindsight, I maybe should have taken out holiday insurance, but it is not really something I thought about when holidaying in the UK!

There was lots to keep a very active 2 year old busy, but a couple of play areas were in or near sand. But, other than that, and obviously not being able to use one of the main attractions, the pool, there is lots to do. There is also a nurse on site, we never visited, and I'm not sure if they would know how to deal with a child with a trachy, but I found this reassuring all the same.

Looking forward to hearing everyone elses holiday ideas. We could maybe give an award for the most ambitious holiday with a child with a tracheostomy (obviously, I would lose!!!!).

Thanks for Holiday Advice

Just wanted to thank everyone for their kind words and advice for our trip to France. We had a wonderful and thankfully incident free holiday. I'll endeavour to write it all up for the magazine once I've finished the mountain of washing!! Thanks again, Helen, Nigel & Luis x

Holiday Advice

Hi there - just wondering if there was anyone out there that could offer some words of wisdom when it comes to taking a child with a trachy on holiday?

We're going to France in 2 weeks with our son Luis who is 1, we're travelling by ferry (don't want to tackle an airport just yet!) and driving down to the Vendee for one week then back up to Brittany for a second week. I've let the ferry company know about Luis' condition, we have the details for the hospitals in both areas and our paediatrician will contact them, he's also suggested plotting the hospitals en route as a back up for the journey. We've got specialist travel insurance through All Clear (thanks to ACT) and Luis also has an EHIC card. Our community team have been fantastic and we've had all of his supplies for the holiday delivered already. We're getting a summary letter of his condition from the hospital that we're going to get translated into French (la tracheostomy!) and we're doing a holiday emergency contact numbers list - there's just so much to think about and I've not even started on general holiday things such as suntan lotion!

Are there any fellow trachy parents out there that have any hot tips? Is anyone willing to share their holiday experiences, good or bad? Has anyone travelled to the same areas with their trachy kid? Your advice would be really, really appreciated.

Look forward to hearing from you - Helen, Nigel & Luis x

Happy Birthday Bea!

Just wanted to say Happy Birthday to Bea, one of our committee members (it's ok, I won't give your age away - your younger than me, anyway!) Hope Katie behaves for the next 24 hours ;

Juliexxx