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 :)

FAMILY FUND

I would like to suggest that our members take a look at the Family Fund website and the Family Fund extra pages.

In the present financial climate you may want to apply for some money towards a family holiday with your trachy child, or perhaps the washing machine has just decided to give up the ghost and there is no money for another one, and washing machines are an essential when you are home nursing.

Take a look. Give it a try. You will find they are very helpful and very accomodating.

I will be putting a full article about the Fund in the next newsletter, but thought some people may like to use the benefits before then.

THERE IS ALSO AN ADDITIONAL DISCOUNT SCHEME FOR STORES LIKE ARGOS ETC.
this is on Family Fund extra.

Best wishes

June.

Weight gain and feeding advice

Hello everyone,

I'm afraid that I'm after more of your fantastic advice. My lo is struggling to put on weight. At 7 months (4mths corrected) she's still only 4.5kg. Although she is steadily gaining weight (120-150g per week) and developing well, with lots of energy, we saw the consultant on Friday and she said it wasn't enough and she wants to give Nadia an NG tube.

She's currently on Infatrini formula milk but is showing signs of wanting to be weaned so I'm seeing a dietican in the next couple of weeks to get advice on how to go about this. I'm hoping that once she starts to take solids in addition to her milk she might start to put on more weight. This really is my last chance. If she is still failing to put on 40g a day the NG tube will definitely be forced upon us.

I know that a lot of trachy babies/children have NG tubes but have heard a lot of negative things about it creating an aversion to taking anything orally, even if the NG tube is just used for top up only.

Has anyone out there managed to avoid the NG tube, despite their lo failing to put on weight quickly? If so would love to hear how you did it!!

Thanks

Sarah x

Humidification

Hi there,

Am looking for advice in terms of room humidifiers. My 7 month old has had her trachy since October and evern since she has come home she seems to suffer from really thick secretions and is permanently wheezy. I use a saline neb on a regular basis but I'm convinced it is the flat that we live in as whenever we go elsewhere she is sooo much better.

I bought a nursery air ioniser a couple of weeks ago but not convinced that it is doing anything so wondered if anyone could make a recommendation.

Hope you can help

Sarah

Wishing a Very Happy New Year to all those who read this BLOG and an especial thank you to those who have contributed so much advice and encouragement for others. We know that there are many who have benefited a great deal from the content of the postings to this BLOG. Keep BLOGGING!!
Webmaster.

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