Hello, I am new to this, but just wanted to share my story and see if anyone could offer any advice
My partners 4 year old niece, Ellie May has suffered from asthma since 6months of age. We look after ellie a lot, as her parents do not have enugh time for the round the clock care that ellie requires.
She cannot even walk to the bottom of our (average sized) garden without struggling for breath and often having to lie down in order to recover. She usually wears a special mask given to us by her doctor who apparantly tailored it to her needs. She sees a specialist at great ormond street weekly where she stays for one or two nights. While she is there, she has to breathe through various tubes and pipes (sorry I am not very clued up on terminolgy here!) The days she is with us( and her parents), we have a nurse visit our house to help her, usually for a few hours a day, but it is in the unguided hours that I worry. We obviously ensure she wears her msks and takes her meds, but this is obvsiously not enough for ellie, who can still barely move without collapsing. Is this a one off case, or are other children in a similar situation? Also, would a wheelchair be advisable? She can walk, but it is her breathing that makes it difficult for her and I worry we will make her worse? Please please could anyone offer any advice?
Thanls soo much!
Kasper and Cheryl