Respite

Hi - I know it seems to vary across the country but I was wondering whether anyone could offer advice on how to go about getting some respite? I've asked my GP, Health Visitor and CCN but no-one seems to know anything about it - my CCN suggested Acorns of all places, I almost said 'he's only got a trachy'! Do some areas have people to help during the night? Luis is almost 2 and we could really do with a good nights sleep! To be honest I'm not sure if I could let someone else look after him but it would be nice to know what's out there.

Many thanks - Helen

PS I never got round to saying a huge thank you to everyone who offered advice on Luis' feeding problems last November. We tried all the tricks you suggested and as of this week he now has a gastrostomy which will hopefully see a change to his oral aversion. Thanks again x

Research group

I attended a research group this week into children's community nursing services. It is a joint venture being run by the University of Central Lancashire and University of Bristol. They invited parents (and some of the children they cared for) to attend and give their views about what is good and bad about the service in their area. These groups are being held across the country and most pct's are taking part. the aim is to provide a framework for community children's nursing services - and other NHS services. If it works, it should mean an end to the postcode lottery as all trusts will provided the same care. I mean, if one county can manage to provide a quality service to it's patients, why can't others! I'll inform you when I get the results of the study.

Julie

Taxi Vouchers

Hi,

Does anyone know whether you can apply for the taxi voucher scheme if you have a child under the age of 1 with a trachy? I know that you can apply for a blue badge due to the heavy equipment that you need to carry around with you, however does the same reasoning apply for the taxi voucher scheme?

Thanks

Sarah x

Increased Secretions

Can anyone advise if they noticed a dramatic increase in secretions when their child was teething? Billy is really drolling with his teeth and the hyocine patch doesn't make a scrap of difference. The amount of suction he is having has increased dramatically or at least I think it is down to his teething? I was wondering if anyone who uses the trachphone noses has noticed that they have caused more secretions? Billy does seem to prefer them as they are much smaller for a little toddler with a short neck! Just not sure if they are doing him any good. He requires suctioning about every 10-15 minutes during the day but is really really dry at night. If his nose comes off at night he gets sticky plugs and he has had to have a few emergency tube changes. When he isn't teething suction is normally a couple of times an hour.

Many thanks

Denise

Moving to North Hertfordshire (Hitchin)

Hello everyone

We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:

Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.

What are social services like in the area?

We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.

Many thanks

Denise

How many catheters do you use a week?

Hi,

I'm having a really big fight with my community nursing team at the moment about the number of catheters we are using. Over Christmas and during January we were using about 200 catheters a week. However she seems to have had a series of colds (and started to teeth) since then and as a result we've had to increase suctioning and the last two weeks have been going through about 300 catheters a week.

The Community Nursing team have decided that we are using too many and have started to ration the boxes of catheters and also threatened to admit her to observe why she is needing to be suctioned so much.

At the moment they're giving us 2 boxes at a time (and expecting us to go to hospital to pick them up) and I am getting sooo stressed out about it all.

Would love to know how many catheters everyone went through 4 months after trach was inserted, and how many you go through when your children are sick.

I really do feel that we are leaving it as long as possible. She only has a size 3 neo-natal tube so I can't run the risk of the tube blocking off! They've also told me not to leave secretions rattling as this makes her work harder to breathe and then prevents her from putting on weight.

I just can't win!

S x

Travel insurance

We have booked a family trip to France in August. Just a short hop across the channel - don't want to be too far from the ports in case of emergency. It is the first time we have taken Sam abroad since he had his trachy. Can anyone advise on travel insurance companies that will insure Sam for the trip. I've been looking through my old ACT mags and I know there was an article on this a couple of years ago, but haven't managed to find it. Any advice would be most welcome, thanks.

Julie

ps Incidentally, if anyone is travelling to France via Eurotunnel and their child requires oxygen, I have confirmed with eurotunnel that they are happy for oxygen for the journey to be transported as long as it is declared at check in. Just for info :)