hi, i'm new here
- Hello, my name is Angela and i live in notts, uk with my partner
Ian,and two daughters, georgina, 4, and Stephanie, 3 months.
Stephanie has had a tracheostomy now for one month, and been home for
two weeks. The amount of work involved with looking after is
astonishing, we are trying to work out some sort of routine!
Stephanie has a lymphatic malformation in her neck which is pressing
against her trachea closing it off, she has had sclerotherapy on the
mass which will scar it up leacing her airways clear, then the
tracheostomy will be removed.
Hope to catch up with people soon
- Hi Angela,
Great to see someone else from the UK, we are in Shropshire. Although I'm not sure if we qualify to use the 'infants' group anymore as Emma will be 4 in March! She has been trached since 12 weeks of age due to a cavernous hemangioma. Emma is treated at Birmingham Children's Hospital. Have you applied for Disability Living Allowance and Attendance Allowance? If you haven't please do, you are entitled.
Have you got in touch with ACT? We have found them very useful, and they put us in touch with a local family who daughter was trached, who have since moved to Nottingham.
Do you have Children's Community Nurses in Notts? We have great support system here in Shropshire, but I know things are different all over the country. I can't think what to write! I do hope you are OK, things are so scary in the early days, but as things become more familiar you do feel more comfortable and capable.
We have three children, aged 10, 5 and nearly 4, so I understand how having another little one to care for can be a real juggle.There are so few of us Brit Parents of Kids with Trachs online, if you have any questions fire away, either on the group or contact me direct.
With best wishes, Sam.
- Hello Sam it's nice to hear from you!
We have applied for the dla and carers allowance, but she won't be
entitled until she is three months (next week!) but at least our
claim is in for when she turns three months.
What is ACT? i haven't heard of them.
At the moment i have two community nurses visiting, each visiting
once a week, it's nice to know that if i have any little niggles and
i don't want to drag the baby to the gp, i can just ask them, or ring
the ward at either QMC or great ormond street.
At the moment it feels like i'm on the go constantly, because of the
mass in her neck, stephanie seems to have a little discomfort with
feeding and so only takes little amounts at a time, but more often,
it's like trying to fight a losing battle with all the things i'm
trying to do!
How has emma coped with the tracheostomy? how is her confidence at
nursery? has she got a speech valve? Stephanie has adapted quite
well to it, is smilingand trying to sit up. (she was in intensive
care from 4 weeks - for three weeks) She doesn't seem to have fallen
behind development wise at all.
- Hi Angela,
The ACT is a charity called Action for Children with Tracheostomies, I have just copied these details from the Contact a Family page.
Cardiff CF14 9BQ
Tel/Fax 029 2075 5932
Web Site: http://www.actfortrachykids.com
They have a twice yearly news letter, and can find families with children with the same condition as your child so you can exchange experiences. They also have a holiday caravan in Devon which we have visited for the last 3 years which has everything you could need in the way of backup equipment. They produce a good easy to read trach- guide which we found useful for explaining things to friends and relatives.
Emma has coped well with the trach, the drugs she was on to prevent the hemangioma from growing further caused a lot more problems than the trach. Emma's hemangioma goes from the top of her skull down to her waist. She wears a PassyMuir Speech valve which we had to fight for, she wears it all day now, but it was a slow process. She goes to mainstream nursery, and has 2 trained nursery nurses who look after her, she loves it! She was an angel at the nativity play, and we could hear her singing above everyone else. Emma is very involved in the care of her trach, she helps with suctioning, and now removes her tube when we do the change.
We also have a disabled parking badge, but only got that once she reached 2. Although ACT have some members who got one before that. Do you get at home nursing cover? After 3 months at home we were given 15hours a week, which enabled me to do the school run myself, which pleased my older kids! Although there was this advantage, I wasn't ever really comfortable with it, and once Emma started nursery I cancelled the cover, but the contract is still valid if ever we need them. We also have open-access to the local children's hospice, although we have never needed it, it is reassuring to know it is there.
Hang on in there, in the early days I really thought I was loosing the plot somedays!! just lack of sleep. Have you got much snow? Emma loves it, it took ages to walk from nursery today, she wanted to leave her footprints everywhere!!
Best wishes, Sam
- Thankyou for the information Sam, i've rung ACT and they are going to
ring me back.
I know there is respite care available around here, but not any
There isn't much really at all really, but Georgina enjoyed what we
did get, stamping around in it!
How many other children have you got? Georgina is my only other, she
is coping really quite well with the situation, and understands that
stephanie needs extra attention.
When i changed Stephanies tube the other day when the tube was out we
actually heard her cry!!!! - with sound!!!! it was amazing, it's
been so long since i heard her voice, it also means that air is
escaping up her trachea, meaning that the malformation is decreasing
- Hi to all on the list,
I haven't been here for too long and I have also not been posting too
much, because my little boy, Ruben, had been having a rough time in that
the disease he suffered from got worse and it became almost impossible
to control his seizures. He developed a pneumonia in the week before
Xmas and it was all too much for him and then he passed away on Dec. 29.
So I will try and stay around for a while, because my husband and I have
a foundation and there is a lot of work to be done.
Please do not be too sad for us; be happy for fro Ruben, because now he
is free to do all the things he could never do here on earth and he can
now be with his brother; Noah.
Mother to Noah 1.1.97 - 04.23.2001
and Ruben 10.22.99 - 12.29.2002