Grace saw the nurse Thursday as she has been unwell again this week. Due to some questions on a previous post as to the cause, the nurse felt we should raise them at BCH on Wednesday. She also told us to ask if it was possible to be referred to see Professor Andrew Bush at the Royal Brompton feeling that a fresh approach from someone that hadn't seen Graces history may well pin point something that could help.
I don't know if this is because Mark is always baffled and searching for answers, or maybe they think that we are thinking they haven't done enough. I don't know. I have never thought the latter as they have worked tirelessly to help Grace, but she just doesn't seem to improve no matter what and they can only hope that she will plateaux soon.
I too feel this, and I know that they may never find any answers, but to just go along with Graces health problems and just manage them as best we can.
It could be just the lowered dose of steroids and they need a chance to let her body adjust to that or it could be a coincidental bug she's picked up at an unfortunate time......... but is it worth going to London to pester a such a specialist to find out no more than we know already?
We have worked hard to give Grace exercise, for example trampolining, swimming etc, but this week the nurse suggested that we just knock it all on the head for a bit and just give her a rest because it might be having a detrimental effect presently............the poor girlie is struggling to do anything at the minute, shoes and socks are an issue!
About Me
- Gilly
- I am a parent of a child with Cystic Fibrosis. I don't go to work anymore. I was an administrator for many years but now feel I want to spend my time caring for my daughter. I have raised money for the cystic fibrosis trust through lots of channels from baking cakes to running the Hydro Active Challenge, and will continue to raise money and awareness as long as I can.
3 comments:
My own personal opinion...
yes it is absolutely worth it.
Let's say (total guess) that your team has 80 little pwcf under it.
Brompton has hundreds and hundreds. All the most complex cases go there, anyone who's being naughty (me ;)) goes there.
I don't think it's a question of not trusting your team either, Bristol was amazing to me but when things got tough I was sent back to the Brompton as they have the key specialists and the most clinical experience. I think it actually reflects just how good your team is that they've suggested this.
If there is something that no one has thought of yet, Andy Bush is your man. He was my paeds consultant and a star. Surely even if you do just get the same questions unanswered, at least all avenues have been explored?
sending lots of hugs your way
xxx
Thank you for that. We are due to go to Birmingham Childrens Hospital on Wednesday. I will mention what the team have suggested to see what they feel on the subject.
I know that we will probably never get to the bottom of things, but, like you have said, know that no stone has been left unturned, but just feel already that its not going to make a difference. Gilly xxxx
Thanks for the good wishes on the nursing hunni, I'm convinced its because I kissed that very ugly toad ;-) If only it was that easy eh!!
I have to agree with Em, you have nothing to lose by taking Grace to the Brompton as they see more patients so probably have a broader knowledge.
I'm thinking about you and I know its not easy but stay strong Gilly, these rough patches can turn around.
I wish I lived nearer then a could give you a proper hug but for now sending a big cyber one.
(((HUG)))
Ring me or tell me to get on msn if you feel like a natter....d'you hear.
xxx
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