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Today has been a horrible,hard day.

15 replies

jenk1 · 22/03/2007 16:36

Took DD to Royal Manchester childrens hospital to see a specialist for her problems with her chest.
When we got there we discovered we were in the Cystic Fibrosis unit which freaked me out.
The Paed said he wants her in overnight to monitor her heart rate,oxygen levels and that he wants to do a sweat test and an immune difiency test (or something like that, i switched off after he said sweat test).
He said he is very concerned because she stops breathing at night.

Then...........we had to go and see her allergy specialist, he deals with her eczema and asthma as well.
He has now put her on steroids, a powder to go in her drink (not movicol something else beginning with m for her chest) some strong tablets to help with her secretions, and he,s put her on an orange inhaler called flux-i-something or other.
And, her legs are covered in red rings, he said this is infected eczema and i asked him what had caused it and he said she,s had so much antibiotics in the last few months that her system is producing antibodies and one of the side effects are these rings.
She,s now on strong cream to be applied to her legs twice a day for that.

And then, when i got home theres a letter from the Audiologist to say she wants to see us and DD, 6 months ago she said she thought that DD needed grommits and would see us in 6 months to discuss it.
(ive pushed that to the back of my mind)
And, next week she has an appointment back at the childrens hospital cos they want her to have her tonsils out AND the SALT rang and asked me could she do a home visit as they want to do another asessment on DD.
They were supposed to provide the CDC with a copy of the asessment done back in Dec but havent and obviously have lost the paperwork.
So ive come upstairs for a good cry cos its not fair, DD has got everything going CP,ASD,Speech problems,chest/asthma/eczema/hearing problems. and i cant take it anymore and i feel like im drowning and i just wanted to come on here and talk to my friends about it .

OP posts:
berolina · 22/03/2007 16:44

Oh jen, I'm sorry, what a nightmare day. Poor dd, and poor you.

Wish I could say something constructive.

Califrau · 22/03/2007 16:45

This reply has been deleted

Message withdrawn at poster's request.

amynnixmum · 22/03/2007 16:45

So sorry jenk

{{{hugs}}} to you and dd

2shoesonanegghunt · 22/03/2007 17:26

sending lots of hugs.

tobysmumkent · 22/03/2007 17:28

Message withdrawn

mum24boyz · 22/03/2007 17:52

oh hun((((((((((hugs)))))))))) thats 1st thing i wanted to do aswell, sounds like so much to take in, i struggle with all appts and its nothing compared to what you've got on your plate at the minute hun, maybe you need to prioritise a little hun, and put the less important appts back a little.
(((((hugs))))for dd too, its so hard to see them struggle and what you are both going through sounds so hard. hope things calm down a little bit soon.xxx

jenk1 · 22/03/2007 19:35

thanks everyone for the cyber -hugs

I have tried to prioritise the appointments, i put off the Audiology one 2 times and i cant anymore, the letter has come from the consultant herself now, she wants to see us and DD.
The tonsilectomy has to happen cos she,s had 3 reoccurences this year alone and the asthma/breathing thats urgent, the speech and language should have been done last Dec.

Im also getting pressurised to switch dd into the hospital that comes under the council we live in, because the hospital that DD is under is the next district along but we are allowed to go to either as we live on the boundary, im not going to switch her and i know why they want us to, the hospital is recommending X Y and Z and the professionals from the other one dont like it, so thats a battle in itself.

OP posts:
mummy2aaron · 22/03/2007 19:54

Awww no what a lot you have to deal with. Good idea to try and prioritise. If I can help in anyway let me know hun.

xxxxxx

moondog · 22/03/2007 20:00

Jenk,it sounds really tough.
As a salt with people with s/n I know that so many parents are just ground down by the round of specialists.

Two suggestions.

Don't put appointments off as they will just loom over you and be a constant niggling worry. Grit your teeth and attend.

Ask for and keep a copy of every report.Don't trust people to circulate/pass on.Some of this is due to carelessness,some due to the fact that with so many people involved,it is easy to leave someone out of the loop.
Put them in a big box file in chronological order and take everywhere with you.
Then,if need be,the relevant one can be taken out and photocopied there and then.

XXX

mymatemax · 22/03/2007 20:52

Ahh Jenk, sorry you are having such a tough time, sometimes a good cry (& alcohol) are whats needed.
Is there a co-ordinator at the CDC that can tie a few of these appointments together for you, or at least make sure reports get circulated.
DS2 has CP,GDD,Asthma, maybe ASD/OCD & the CDC co-ordinater has helped by combining some appts.
Hope things improve for you soon.

duke · 22/03/2007 21:01

Hope you have a better day tommorow. Do somthing you know your dd loves to do it may make you feel better about all the yucky stuff today.

jenk1 · 23/03/2007 14:43

Well things just get worse.
DH was explaining to DD,s key worker this morning about them needing to give her the steroids in her food and she said "Oh i forgot to tell you the other day, DD was sat painting and we noticed her lips were turning blue/purple, it was really funny, i forgot to tell you"
So, DH said has this happened before and she said erm yes a few times.
Yesterday the Consultant said he wasnt unduly worried cos we said DD,s lips never turn blue.
So we phoned and tried to speak to him but he,s not there, so we phoned her usual Consultant and he said that its because of her asthma and he wasnt worried cos he saw her yesterday and besides she is on steroids now and this will sort that out.
But Nursery?
Her keyworker is usually on the ball, but she,s heavily pregnant and not quiet with it, but i dont know what to do about that, i mean thats quite serious.
We have a meeting next week in nursery and i will raise that but im not sure that i should be doing something before then.

OP posts:
Woooozle100 · 23/03/2007 14:59

Oh Jenk - I'm shocked that nursery failed to tell you this. Sorry that its compounded your shitty day yesterday.

BTW - I can really relate to what yr saying about the totality of appointments / problems. I often feel like this with my dd - like she has a specialist for practically every organ of her body. It is difficult when it seems as though everything comes at once - just try and visualise a time when a lot of these problems are managed / under controlled or oh joy dare you even imagine just bugger off completely (!)

All the best x

Woooozle100 · 23/03/2007 15:00

under control. Under controlled wouldn't be that good

geekgrrl · 23/03/2007 17:56

oh jenk it all really sucks

don't know what to say really, it sounds like an all-round shitty & unfair situation at the moment, poor little pet.

I hope you manage to have a reasonably nice weekend. Pour yourself a large wine.

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