HAPPY CHRISTMAS

Just to wish you all a really enjoyable Christmas and a Happy, healthy and prosperous 2009.

Take care and look after yourselves.

Every best wish

from

Terry and June

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

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

Thank You

Just wanted to say thank you to all the Committee for today's AGM. We all had a lovely day, and were amazed that Dominic happily stayed in the creche too. An extra big thanks too then to the Diana nurses and creche helpers. For obvious reasons, we have only ever left Dominic on a handful of occassions, but knowing he was looked after by such a competent team made the day all the more relaxing. It meant we actually listened to the speakers too, who were very informative - think a trip to Leeds may be on the cards now!

Hopefully we'll be able to make it to the AGM 2009.

Thanks again

Laura, Andrew and Dominic

Just to let you know about a new online publication which has been launched - it is a not-for-profit educational and Special Educational Needs magazine. Go to www.educationbulletin.co.uk to have a look at it. They have requested feedback from those who read it and would be interested in any parents' stories about their childrens' educational experiences, so feel free to contact them. The next issue is due on 20th June.
Amanda

A MESSAGE FROM THE TREASURER

Hi Everyone

GREAT NEWS !

ACT has some great news for its members.
We now have a 'Justgiving' web page which will make it easier for members to DONATE or for you to set up a FUNDRAISING page to which your supporters can contibute.

So OK what's so great about that you may think; well if you send me a cheque for £10, that is all the bank will pay ACT (Don't misunderstand me that's still good for ACT). However, if you are an income tax payer you can go to ACT's 'Justgiving' web page
at http://www.justgiving.com/aidct/donate where you can donate your £10 and we will receive between £11.84 & £11.94 depending on which bank card you use to make your £10 donation.

So why not have a look at the web page, it's a secure giving site, it already has a fundraising page open from ACT member: John Worthington; he is running in a marathon so you may want to support him in raising money for the charity.

Terry Foster
ACT Treasurer

URGENT ADDITION

URGENT POSTSCRIPT TO POSTING BELOW.

Owing to a recent illness Mary is having a period of recuperation away from home.

Therefore you may find it difficult to contact her via her home number given below.

She has got her Caravan letting diary with her and you can contact her on the mobile number below.

07949 412 592

Any further difficulties contact me or Terry at home 01204 578522 between 10am and 8.30pm

Thank you

June Foster

URGENT MESSAGE - PLEASE READ

An urgent message from Mary our Chairperson

and Caravan co-ordinator.

Mary has still got a lot of vacant weeks in the Caravan for this year. We appreciate that all of the school holiday weeks are booked up but there are plenty of weeks left.

It is essential that we fill all of the weeks to make it viable to keep the Caravan open for those of you whose children have trachy's to benefit during the main summer holidays.

To keep the van as fully booked as possible your child does not need to still have their trachy and Mary would consider bookings from members who are grown ups!!. In fact I think she may even consider grans and grandads as long as they appreciate the caravan, look after it and don't smoke or have a dog.

The weeks still available are:-

April 19th and 26th
May 3rd 10th and 31st
June 7th 14th and 21st
August 30th
September 6th 20th and 27th
October 4th 11th and 18th

Details of the caravan, the site facilities and the area around are on the ACT website, you can phone Mary on 01245 351702.

Dawlish is a lovely place to have an 'in season ' or an 'out of season holiday'. Please help I don't think we have ever had such a bad year for bookings.

A lot of work goes into keeping our caravan going from year to year and to keeping it in a good condition. The hire fees are very reasonable and those of you having financial difficulties may qualify for a Family Fund grant. Ask Mary she knows how to go about it.

The Welcome site has very good facilities and Dawlish has very mild weather in early summer and the Autumn. There is lots of countryside to explore and there is a nearby golf course.!!!

Car Seat belts & Trachys

Could anyone give some advice on transferring to a booster car seat (the full seat rather than the cushion) with a small 5 year old child. The usual car seat belt crosses very near to the trachy tube so any ideas for preventing the seat belt rubbing against or near the tube would be gratefully received. If anyone can recommend a particular car seat over another, it would be useful.

Many thanks!!
Amanda

Comments and new Pop Up Window

Thanks Julie for all your recent comments. Everyone should now see a Pop Up Window appear which will show all comments relative the Post concerned. You will also now also be able to see the original 'Post' behind the window. Any new comment can also be entered in this Pop Up Window which should make things easier for all.
Please let me know if there is anything you would like changing on the Blog to make functioning better.
Webmaster

Naidex 2008

Hello all,

I found this link to the Naidex exhibition at the NEC.

The show is for the public as well as professional users / buyers and will be exhibiting all kinds of medical and nurisng aids etc.

The show runs between 29th April and the 1st of May.

The shows website is: http://www.naidex.co.uk/

Looking to attend myself.

Regards to all,

Kevin Ford.

Holiday Hotel with Nurse Support

Our son Paul is profoundly disabled and has a tracheostomy. Travelling away from home can be a nightmare. So holidays are not always as relaxing as they should be. We could fill a truck with the additional equipment we have to carry around as many of you will appreciate.

Steve and Denise are a couple who have started a Bed and Breakfast Hotel in Torquay. One of their rooms has been adapted with a hoist , a rise and fall bed with sides and wetfloor showerroom. Denise is a trained nurse with experience of caring for trachy children and cared for Paul and many other trachy kids when she lived in the Kettering area.

She now offers this support at her Hotel. During our stay Paul was cared for by Denise allowing my wife and I to have our own time to go out in the evening or for the whole day - and to have that all important lie in. Her husband Steve provides a wicked breakfast in the morning and good company over a couple of drinks in the evening.

Have a look at their website for info: http://www.crowndalehotel.co.uk/

Nebulised Colomycin

Following an enquiry by a parent, has anyone got any experience of administering Colomycin via a nebuliser, for the treatment of pseudomonas? Any guidelines or advice would be gratefully received since the parent has had conflicting advice so far from her medical team. Please get in touch via this blog or by using the ACT email: support@ACTfortrachykids.com

Many thanks
Amanda

Clario suction pump

Does anyone have any info on the Medela Clario suction machine? We are hoping to try one out with Sam, to see if it is any quieter, and lighter, for school. Are they offering free trials? I have tried their website, but it is not much help.
Thanks
Julie

I think this is the first posting for 2008! Just to say, please do not give up if you have problems registering on this Blog or can't get it to work. Please contact Amanda on 01823 698398 or email support@actfortrachykids.com and we will try to help sort out any difficulties. If we had lots of parents using this Blog it would be a really useful resource to exchange ideas and to offer mutual support etc but it will not be much use if only a few use it. Do look back over previous posts to see if there is anything which would be relevant to you and add a comment if you feel able to!
All the best for now, Amanda