#26
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(04-20-2010, 02:43 AM)luciesmum1 Wrote: I used to get reepite for Lucie but when she started nursery i was told that i got enought repite while she was there, even tho i had to stay with her as there was no staff trained to look after her! bloody joke! I was wondering could i apply for the direct payment to get Lucie into a breakfast club or have someone come to the house to sit with the girls, as we are really struggling at the moment with the overlap of stuart going to work and me getting back from work (he leaves at 7 and i get back at 9) i've had to cancel work a few times as we can only leave lucie in the care of someone who is fully trained to care for her. In other words can't just pop next dorr and ask if they can keep an eye on the Children! Work get really funny with me saying i'm letting down the families who have children with trachies until i point out to them that i'm in the exact same dilema! duh!!!!!! lol

Hi Lucie,

My son had a trachy. He doesn't have the tube anymore but does still breathe through the hole.
I know that it very much depends on your area as to what respite you recieve. I have friends in other areas who get nurses who come in at least a few nights a week to look after their child whilst the parent sleeps. And I also know people who get nothing.

Have you had your needs assessed? As a carer your needs should be assessed seperately from your childs needs. Here is some info about it - http://www.direct.gov.uk/en/CaringForSomeone/CaringAndSupportServices/DG_10026286

I got direct payments for my son. I used them to pay my mum to take him overnight once a week.
Unfortuantely you can not use direct payments to get someone to babysit whilst you work.

Do you have a children's hospice near you? A friend of mine's little boy used to go to the local hospice for respite a few times a month. He loved it there. There was so much going on. And all the staff are fully trained.

I am surprised about the nursery. If they accepted your daughter then they accepted her trachy and all. It looked for a time that my son would start nursery with a trachy and they were all set to train four members of staff.
If the staff refuse to be trained can you find a different nursery?
And nursery should not be considered respite. We get direct payment as well as son going to nursery.
Dodgy
#27
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Hi Dawn, Lucie's nursery did do some training but it took 13 weeks and in the mean time i had to stay with her. she is 8 now and is going to a mainstream school who have 5 members of staff trained however Lucie told me that none of those staff members are currently working in her class, but that is another whole mess of a story! With regards to having my needs assesed o we haven't had that. I will have a look at the link thanks. I was wondering about the direct payments, it's not so much a babysitter but more a case of being able to pay for someone to care for Lucie properly whilst stuart goes to work and for me to come home as the school currently have no breakfast club! i need to know that Lucie is going to someone who can givw her all the care she needs ad requires! the other two children i can sort but as you know trachy Children are a whole different story.
We used to get 2 nights a week care but i gave it up as i was being constantly let down as lucies nurses were going to children with a greater need, but i wasn't always told until an hour before! I relyed alot on the day care, but as Lucie attends school i no longer qualify for it. All i need is someone for 2 hours twice a week while i'm at work. Financially we would be better off if neither of us worked but i like to know i'm paying my part to society all the time i'm able to. (please if anyone is on benefits don't take offence to that as i know sometimes there is no other option) i would just like some help to continue to do my job and know that Lucie is properly looked after. You are right about the areas, i actually work as a health care assistant for a nursing agency and i look after children with trachys who get 7 nights a week care and 30 hours repite during the day as they are in the county next to us, but in my lovely part of town we get zilch if they can get away with it! so so wrong! Can i ask why your littel one had a trachy? Louise xx
#28
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Initally it was done as an emergency procedure. He had gone down to theatre for something quite seperate. When they tried to intubate they found his airway was all but swollen shut. He was an very early baby and the ventilater had damaged it.
But it turned out he had floppy airways so would have needed one anyway. He was ventilated for 9 months.
He was decannulated at 18 months. Three years later they still can't work out why he still needs the hole to breathe.

And Lucie? Why did she need a trachy?
Dodgy
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Hi Dawn thanks for sharing that! It must have been a complete shock! Lucie has got one as she was born with no lower right jaw bone and this has made her jaw very small but her tongue is normal size. Her small jaw pushes her tongue back and into her airway. She has had the trachie for 8 years now, and is very reluctant to go into hospital for a jaw reconstruction due to the bad experiences she has had in the hospitals over the past 8 years! We knew she needed a trachie as the ent consultant at our local hospital said she would need one after speding 5 days trying to stabilise her and the only way they could keep her breathing other than a ventilator was to put her on her tummy with tubes down her nose and into her throat to stop her tongue from falling back. He called in a favour he was owed from an ent at great ormond street and 3 days later she was transferred! Scary stuff and not something i woul,d like to go through again! Love her to pieces and wouldn't change her for the world other than obviously not to put her through all the ops she will have to endure at some point! She has grown rather attached to the trachie! lol

How early was your little boy?, did he come home on the vent? i look after a premmie who is vetilated at home on a nippy!
#30
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Sounds like Lucie, and you, have been through an awful lot in her short life. I am not at all surprised she is a bit reluctant to go back into hospital.
I know the thought of losing the trachy is also hard for a child the older they get. It is all they have ever known and is part of them.
Sam loves his hole and all the silly noises he can make with it. I have tried to prepare him that one day he won't need it any more but he gets quite distressed at the thought.

Sam didn't come home with a vent, thank goodness. We were all set to but he managed to come off 3 days before he came home. He just needed oxygen till he was 18 months.
This is a short video of him - http://www.youtube.com/watch?v=EQcWhr4BTxU but best played with the sound on.
Dodgy


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