Good news!

Just wanted to let everyone know that Sam was successfully decannulated this morning. He was capped for 24 hours then took the tube out himself this morning - he just wanted his speaking valve back! At the moment he has the speaking valve taped over his stoma. He still appears a little confused as he has lived most of his life with a trachy, but no problems with breathing or oxygen saturations. the doctors just want to keep him overnight for monitoring then he should hopefully be discharged tomorrow morning. I can't believe this day has come after we hoped and prayed for it so much - it's not quite sunk in yet and I have to admit to being pretty apprehensive when they decided to take the trachy out this morning, I felt pretty sick. But everything seems to be fine - I'm looking forward to being able to leave all those bags at home!! Just imagine, only having to take a book bag and a lunch box to school every day ;)

Practical advice on getting out and about...

Now that the weather is improving and I am finally a full time mummy I would like to get out and about with Luis more but still find it a struggle so am interested to hear how other parents manage it.

I have a Laerdal suction machine which is like carring a small typewriter around (!), a bag that contains his emergency kit, catheters, gloves and humidivents, a nappy bag with all the usual toddler kit (kept to a bare minimum) and a nearly 2 year old who is not terrible but is definitely trying, plus the obligatory toy that Luis can't leave the house without bringing.

The easist thing is when Luis will sit nicely in his pushchair as everything fits perfectly on it, but he won't stay in there for long. He then won't walk for long either but won't get back in the pushchair which is when I end up carrying him and pushing a precarious pushchair that tips without him sitting in it.

So, I am all ears to hear about how others manage (or don't!) to get out and see if any parents of older kids have any top tips. Does everyone look like they are leaving home when they are just popping to the shops?!

Looking forward to hearing your ideas.

Helen x

Bronchoscopy and Chest Infections/Increased Secretions

Hi there

Has anyone noticed that after a Bronchoscopy that there child gets a chest infection almost immediatley or several increased secretions? Billy has a scope in September and as soon as he came out of theatre he had full blown chest infection resulting in spending almost 2 weeks in hospital requiring oxygen. I just put it down to being a coincidence until yesterday....he had enough scope and as soon as he came back from theatre his secretions were continuous. I hadn't suctioned all day, he went into theatre at 3 pm but when he came out it was every couple of minutes. He has been the same today, although he doesn't appear to be ill i.e. no temperature etc but lots of very green secretions. I've tried nebbing him but to no avail.

Many thanks

Denise

AGM and Family Day

I would just like to express my thanks to the committee for a wonderful day today. The speakers were highly informative and seemed to genuinely care about the children in their care. Thanks also to the ladies who provided the excellent buffet - I couldn't squeeze anymore in, though I would've liked too (and James had 3 pieces of cake!) My final thanks go to the ladies from the Diana team who cared for our children - I'm sure they will sleep well tonight after running after Sam!

Julie

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