Feel sooo guilty!

Saw Maddies cons yest who is now referring her to the childrens hospital for further input. He said that her Asthma isnt responding as it should to the meds etc. He said that she needs further tests to establish what is going on and has expressed his concern with going into the winter months.

I also showed pictures of her face when swollen, described her choking events etc. Shes had 4 courses of pred over the last 6 months and thats in whats supposed to be her best 6 months! Shes already on Seretide, Montelukast, antihist's and ventolin.

He has said she'll need a broncoscopy. Im soooo scared of this. My poor baby! Just feel so guilty, like I couldve done something different for her. Maybe Im not getting her meds into her properly? Maybe shes not taking the whole dose? Maybe maybe maybe!

Has anyone any experience of a broncoscopy for a child?

What are they looking for??

I feel so churned up inside by this. She looks well (apart from swelling in the face after triggers, plus her purple bags under eyes), she is active and chatty. I just cant get it into my head that shes poorly poorly! The professionals think she is though. Day to day we manage fine, although we're scared to leave her with anyone in case she chokes.

Sorry just needed to let it out. Feeling quite emotional with it all. Guess ive been burying my head in the sand. It isnt until we have an appointment that it all hits me again!

Emily.

Emily.x

3 Replies

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  • Hi

    Just want to say, Don't beat yourself up, it's sounds like you are doing all you possibly could for Maddie. But unfortunatly all the meds are not working at the moment, and she still needs more tests. It is certainly not your fault.

    I used to worry myself silly, when my son was so poorly, even when we were doing all the meds we could and getting all the right help. Some things are taken out of our hands, and all the maybe's in the world won't help. So don't feel guilty, and sometimes, I think you have to bury your head in the sand, or you would crack up with all the worry. You have to take things day by day, and get on with things as best you can for yourself and your family.

    Sorry dont know anything about broncoscopy, but am sure other folks will help you with that.

    Hope things improve soon for Maddie

    love shelly

  • I've been in exactly the same boat as you and nearly gone mad with the sort of feelings you describe. But I agree with Shelley, sometimes these things are taken out of our hands, and we can't control what happens. It sounds as if Maddie is in good hands with the consultant, so that is one step forward. Let us know how things go. xx

  • I just saw this message. My daughter had a bronchoscopy and bronchial lavage just a few days ago. It is her second one. The procedure took less than an hour and she was back on the ward in just over 2 hours. Hopefully this will give her consultants some more information about her condition.

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