Grace starts IV's tomorrow. The first dose will be administered at the hospital as normal after port access.
We are not going to take the wheelchair even though Grace is struggling to walk presently due to breathing difficulties and when the ibuprofen has worn off and the pain in her joints kicks in.
The physio from BCH's comments have stuck firmly in my mind, and I feel, if we use the wheelchair, that we are adding to her problems.
Grace did half a day at school today, when she came home she ate her lunch and sat at the computer all afternoon (I was making sure she got some rest and did nothing strenuous) by teatime she could barely walk and was extremely lethargic.
We do everything that is asked of us, never miss physio, never miss any medication and yet our child cannot walk upstairs to her bedroom without having to have a lye down before changing out of her school uniform, and yet she doesn't, according to the physio at BCH need a wheelchair and should be getting as much exercise as possible.
What should I do for the best, go with my own instincts? listen to the physio? What?...... I don't know anymore. I have searched the internet for symptoms, cf and non cf related.....but still don't know what to think next.
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:
Gilly, I can so totally understand how you are feeling. I've had so many comments to me in the past (all from one particular CF doctor) that made me question everything about myself and lose my faith in myself. Thank god I am now under a new, totally amazing CF team at a different hospital. Over the last 18 months they have given me my confidence back by assuring me that I know my body and that they will listen to how I feel and trust me. I can't tell you what a relief that is!
Never ever doubt your instincts as Grace's mother. Any CF professional worth anything will tell you that no two CF patients are alike. You can't just rely on test results, you HAVE to listen to the patient and their family because no one knows their individual condition like they do.
You're not stupid, you'd never use a wheelchair for Grace for any other reason that feeling she needed it for her quality of life. You're not an idiot, you know exercise is important for CF, you're not just letting Grace be lazy!!!
My personal advice would be to arrange a meeting with Grace's consultant and tell him about this comment and ask to discuss the situation with him. If (as I suspect) he totally agrees with why you use the wheelchair, then he will ensure that he has strong words with the physio.
I don't know how you feel about your CF team (or even where you go) but if you are not satisfied with the care Grace is getting then please keep pushing and fighting for her. I nearly gave up doing that at my last CF centre and my lung function was going down and I was getting sicker and more exhausted but they just told me it was to be expected and that because I wasn't growing anything, that I didn't need treatment. They even started implying it was in my head! (Oh and they mis-diagnosed severe DIOS as "just needing to do some sit-ups"!)
My hubby and Emily kept on at me not to accept it and to move and I can't tell you how happy I am that I did. I am now 10 times better than I was and my team have never stopped trialing new treatments and giving me investigations to get to the bottom of things.
You are the expert on Grace, no one else and you - as her Mum - need to be listened to and respected. Whatever you do, don't let ignorant people make you lose faith in yourself and your instincts xxxxx
Emmie is right - your instincts are more accurate than Gracey's team's. Not just because you are her mother, but from reading everything that little girl struggles with you are definitely on the right lines getting her extra help and support.
Please please use the wheelchair for her, she will be so much more comfortable and be able to do much more without feeling so ill.
I had a surgeon ask me why I was in a wheelchair once; he'd removed the top half of my lung 10 days before. They really don't know sometimes, only you can see when she needs help and you need to trust yourself on that.
xxxx
ps - tried to ring the other day but didn't get through, will email you my number as that might be easier ;) xx
Oh how I agree with the above comments Gilly, on several occasions I went against my better judgement and did exactly as the doctor's advised because we trusted that they knew best. But I learned that my own gut instinct was usually spot on and I started to challenge decisions.
How the hell can they expect you to deny Grace a wheelchair then stand by and watch her struggle to breathe.
Stay strong hunni and insist that they listen to you or change to a team who will.
Lots of love and a big (((HUG)))
xxx
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