Ellie-May

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

10 Replies

oldestnewest
  • i infortunatly cant offer advise but hope to god sum 1s got sum for u both, i just wanted to say im so sorry for ellie-mays health and by the sounds of it exstremly lucky she got ppl who care about her as much as u do, i hope things get easier for ur little princess and u getthe advise ur luking for sends loads ov luv ur way all the best x x x

  • Thank you for your kind words.

    It is horrible to see her suffer, and in particular the fact she cannot do anything other children her age can, though apart from her health she is more than capable. She also has to spend most of her time laying down flat (following the advice of her nurses who say that too much movement will interupt her breathing further, not that she is able to move far un attended anyway) so she has never been able to attend nursery and it is unlikely she will be able to attend school due to this reason. She is usually fed through a tube by the nurses but is tiny for her ages (weighs less than 1 and a half stone at 4 years old.

  • truely sorryim truely sorry for wot u and ur fragile angel is going thru my heart bleeds for u all it truely do the thought of wot ur going thru brings genuin tears to my eyes i hope to god they manage to do sumthing for ur precious angel, i will count my blessings everyday my boy is 2 and has asthma but he absolutly luvs skool and has to be given his medsthere the thought of him not being able to go and do wot he enjoys makes my heart sink my luv thoughs wishes and prayers are for u all i hope the future holds brighter things for u all ur amazing x x x

  • truely sorryim truely sorry for wot u and ur fragile angel is going thru my heart bleeds for u all it truely do the thought of wot ur going thru brings genuin tears to my eyes i hope to god they manage to do sumthing for ur precious angel, i will count my blessings everyday my boy is 2 and has asthma but he absolutly luvs skool and has to be given his medsthere the thought of him not being able to go and do wot he enjoys makes my heart sink my luv thoughs wishes and prayers are for u all i hope the future holds brighter things for u all ur amazing x x x

  • P.S

    Meant to say, yes a wheelchair sounds like it would be helpful! GOS can refer to Ellie May's local social services department who will provide an Occupational therapist to assess her for equipment at home. to be honest, if there are lots of nurses visiting then I would badger them too!

  • Thanks for all the support everyone! It is very much appreciated!

    Next time Ellie May is in GOS (later this week) I

    will mention the equipment at home and ask them if we could prehaps have the use of a wheelchair. It just seems so horrible thinking of her being stuck in a wheelchair, but at the moment she is virtually house bound (excpect her weekly trips to hospital which are by a private ambulance anyway, so she can lay flat) and obviously whilst in hospital she is bed bound too!

    At least a wheelchair would mean she could get out abit (although being in the upright position for over about half an hour does generally cause us problems).

  • I'm afraid I can't offer any sound advice as I am new to this website myself. It sounds truly awful. I struggle with coping and dealing with Max and he is nowhere near as bad. I feel so much for you all. I think a wheelchair would be a great idea. Since I've joined this site everyone has been so helpful and understanding and I wonder of you contacted the nurses (I think it's 9-5 Mon-Fri) they might be able to provide you with more information and point you in the right direction as to getting more assistance???

    My thoughts are with you all xx

  • I agree, the support has been fantastic! We are definatley considering a wheelchair, her nurse will be visiting soon so going to ask for information. X

  • Hello and welcome

    This is a great place for advice and support.

    A wheelchair does sound as though it may benefit her. Fortunately little nutter is not affected too much by his asthma. What about using a buggy/pram to get out and about with her while you are awaiting help from an OT. I sometimes still use a buggy for little nutter at the age of 4. Also buggies can be more enclosed/warm and also lie back compared to wheelchairs that tend to be exposed to the eliments. Hope you manage to get the help and support Ellie-May needs and that she is more able to get around the house/out and about better. Wheelchair sounds a great idea and in an ideal world an electric one would prob suit her best so she would have a bit of independance without tiring herself out trying to propel it herself.

  • We do still use her buggy at the moment, it is the only way to really get her out and about. Although at the moment, she doesn't have much enthusasim, but we obv don't want her in bed 24/7.

You may also like...