Farewell, Mostly Horrid Week.

Pange

It’s been an odd week.  I don’t often write about stuff that happens in our lives away from the internet, but this week has been so difficult and sad that I am making an exception.

Last Sunday we noticed Ruby’s ear was bleeding, and she was in pain.  She’d had a nasty ear infection the week before, which had involved rivers of pus, and a lot of pain, but the blood concerned me.  After debating whether to take her up to a&e, I decided to let her sleep and go back to the GP on Monday morning, reasoning that a good night’s sleep would be better than hours of waiting at the hospital.  And for what? Hard to know if we’d even get to see an ENT on a Sunday night, but I presumed it unlikely.  

The GP we saw was unconcerned.  

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Glue Ear: A Sequel

Ugh, I need to vent, and then celebrate.  Mainly, I need to use this space for a bit of a brain dump.  The reason? Roo’s (lack of) hearing.  Are you sitting comfortably, lovely readers? Then I’ll begin:

About six weeks ago, Ross and I started to notice something.  Roo kept saying “pardon?” and when she spoke, it was very quiet.  I crossed my fingers things would get back to normal, but when they didn’t, I took her to see the doctor.  Long time readers of this here blog might remember the crap I had to deal with the first time I took her to see the GP regarding her glue ear, and that after a fairly long time, she had some grommets popped in her ears.  Because of aforementioned crap, I took her to see a different doctor at the surgery, the practice’ paediatrician, no less.  What I hoped would happen was that he’d take a look at her notes, and a peek in her ears and refer her back to either Audiology, or, better still, the ENT consultant.

He didn’t.  

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A Week Post Grommets and Adenoidectomy

grommets

It’s been a week since Roo had her adenoids removed and her grommets inserted.  She is back to her normal self.  Her recovery has been good.

We noticed a change in her hearing almost instantly…

I was told was to be expected with grommets.  Throughout the week she has been saying things are louder.  She has heard things that I haven’t, which, I won’t lie, has disturbed me somewhat.

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We had a doctor’s appointment this morning

It did not go well.  I am massively angry.  I am hugely cross.

I’ve been quite concerned about Ruby for a while.  She has been under the weather since November.  Not sick to the point of staying in bed, but she has high temperatures every week (I should buy shares in Calpol), she’s very snotty and she’s started getting in ear infections.  A couple of weeks ago, gloop was pouring out of her ear.  We rushed her to the out of hours clinic and the Dr couldn’t see her ear drum for gunk.  She’s had antibiotics which have caused her to suffer a horrible side effect, yeast infections are no fun in adulthood, I can only imagine how grim it must be for someone too little to understand.

It’s not just that (as if just that wouldn’t be enough for a parent to become quite concerned – you cannot tell me it’s normal to be unwell for 6 months).  Her speech and social development have gone rapidly downhill.  My previously happy, sociable little girl has become withdrawn, scared of, well, pretty much everything, and spends most of her time pottering about doing things by herself.  She no longer settles at nursery, I’ve been told she never plays with other kids, she won’t join in unless the activity is explained to her step by step.  I can’t leave her at her kid’s group when we go to church, she no longer joins in the singing at the toddler music class we go to.

And she’s sad about it.  She wants to join in, she wants to play and socialise.  She doesn’t understand why she can’t do things the same way other little kids can.  Last sunday, she told me she was scared of the other children at sunday school, but that she was sad and she wanted to join in.  She tunes out of conversations and situations where there is a lot of ambient noise, and she’ll only converse when you sit at her level and talk to her loudly and clearly.  Her vocabulary is fine, the clarity in which she speaks, however, is not.  She cannot hear the difference between sounds and when she’s in a large noisy group, she can’t hear when she is being spoken to.

So we took her along to the doctor, and we were fobbed off royally.  This morning I was told:

  • that this was perfectly normal behaviour in a toddler (not when it’s such an obvious decline in her development).
  • that 6 months isn’t anything to be concerned about and that it’s a short history (the NHS site suggests glue ear corrects itself in 3 months, so half the time I’ve been worried).
  • that grommets are no longer inserted (lies, they most certainly are).

I pressed the point that I was very worried and wanted her assessed by an ENT because I am convinced, absolutely convinced she has glue ear and I was told that they don’t treat glue ear anymore, and anyway, did I even know what glue ear was?

Yes, actually, I do.  I had glue ear as a child and it’s left me partially deaf in my right ear.  My glue ear meant that my ear drum perforated and is scarred as a result.  It will never move the way it should again, I will never have normal hearing again.  I was told she could have her hearing tested but that her ears look clear. I was told it would take at least 6-8 weeks.  I said I wasn’t happy with that and that we might have to be seen privately, and suddenly, would you look at that, she may be seen within 3 weeks.  Funny how when you offer to throw money at a situation, all of a sudden the consultant can find the time and inclination to get off the sodding golf course and you get bumped up the queue.

And I am angry at my husband who sat there and did nothing, didn’t stick up for his little daughter, didn’t help me out when I was trying (and failing) to get the GP to listen to me and treat me as anything other than a pushy hypochondriac mother, didn’t advocate for either of us, and thought that how we were treated today was okay.

It’s not okay.  He has no idea just how not okay any of this is.

So as soon as I got home and calmed down enough to compose myself, I called the Health Visitor.  I know a lot of people have issues with HVs but they are fantastic down here.  We are lucky.  She asked me all sorts of questions about Ruby’s social development, about her hearing, my history, her hearing tests, her general health.  And she’s put through an urgent referral for a hearing test and given me the contact details of the paediatric audiology unit with instructions to call if we don’t hear within 3-4 weeks.  She’s done all the things Ruby’s GP should have done and didn’t.  And I told her so.

I am thinking of contacting PALS about the standard of care Ruby received this morning.  I am not often one to complain but I am angry and hugely upset over this.