sooo hard!!

Maddie has been in hosp for couple days this week for planned tests. its been horrible!

The naso gastric tube she needed was traumatic for her to have put down. She had a rough couple of days but was discharged Tues. I had to go back to the hosp yest to pick up a neb and to have training on how to use it. I drove there with 2 small children, sat in the waiting room only to be told the nurse who needed to do the 'hand over' was away!

Again today im waiting to hear what I need to do!

Im shattered and exhausted with all of this. I feel drained and on edge totally watching my little girl upset or uncomfortable.

Shes brewing an attack as seems to have all the visual signs.

I just feel at the end of my tether and wish the hosp could be more supportive once home!

I seem to be walking around in a complete daze to be honest, not sure which way to turn. Ive got 2 other children. Trying to juggle them all and at the same time be on stand by for an attack is taking its toll on me.

Anyone else feeling like this? Its so hard being a parent to an asthmatic. Unless people have first hand experience of it, it must be impossible to understand. I put a brave face on to the world but inside Im crumbling.

Dont really want any advice, just need to write it down somewhere and thought here the ideal place.

Emily.x

5 Replies

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  • Hi Emily, wish I had a magic wand for You to make things better, and to help my son and daughter with thier probs. But failing that, Im thinking of you and maddie as your struggling, sending you all hugs.

    I know Its retched seeing your children so ill, and not bieng able to help much, and pretending you are coping well with the situation, but inside crumbling, iv'e been there, and still there so many times.

    and writing it all down does help.

    Thinking of you all

    shelly xx

  • I really feel for you Emily. I just have one child (well, teenager) and that's bad enough. The asthma makes everything difficult and on top of that you have other children. I hope you have some family support, even if it's just someone who's sympathetic (my mum has been a great support to me over the years).

    I think you'll find the nebuliser will be helpful. Ours has been an absolute godsend. Thinking of you and sending you a big hug. xxx

  • Aw Emily, big hugs. I can only imagine your knackeredness and utter frustration. Wish I could say let's have a girls night out as it sounds like you need one!

    Keep your chin up love xxx

  • Hi hunni, I am so sorry. I am a sufferer & Mum of two with asthma so I can relate to your post. I wish I could do or say more but I am thinking of you all. Sending you loads of strength & love.

    S.Mama

  • hang in there

    As a parent of three children i can only imagine what its like to have this additional worry all the time.

    I also have a 13 month old who has excema and once flared up so badly that he needed to be hospitalised (asthma and excema closely linked through breathing). Thankfully we have it more under control now but it flares up spontaneously and we are very careful about his envornment and do not go on many trips as it seems to upset his system.

    Have a close look at Maddies breathing and see if she breathes through her mouth at any time or perhaps only when she is poorly. I have kept a very close eye on all my kids breathing and believe it is a vital but chronically overlooked component in lifelong better health (they all nose breathe) and when youngest is older (too hard to do with such small kids) i will change his breathing from the noisiest in the house to quiet like the rest of us).

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