Wednesday, 20 April 2011

New Mask

  • It has a good seal.
  • No pressure in bad places.
  • It seems quieter than the others.
  • Very quick release catch for when she's being sick.
  • She hates it.
  • It fills her tummy with air.
  • It makes her sick.
  • Condensation from the humidifier means she can't see out.
  • She can't suck her thumb.
  • Her shouting is muffled so I can't always hear her calling for me.*
  • She hates it.
It's been a week now. Screaming (muffled), retching, begging and pleading, holding my nightie hostage so I have to come and take the mask off when I go to bed myself. We've tried the "wear it until I go to bed and then I'll take it off" and the "Go to sleep without it and I'll put it on when I go to bed" and the "JUST WEAR IT AND BE QUIET AND DON'T EVEN THINK ABOUT BEING SICK" option (surprisingly effective but not to be recommended I think). Last night I went out. Huge upset as I was going, so I took her mask off and told her I'd put it back when I came back. Four hours later, as I walked through the front door, she called out to me. And, instead of the peaceful sleep the sitter (and I) had assumed she was having, she had bundled herself face down into the far corner of the bed, burrowing under the bed sides and nearly suffocating herself (as well as pulling out sundry other overnight bits of tubing) in her panicked attempts to avoid wearing the mask. I gave her the night off, and big silent tears rolled down her face as she clamped down firmly on her thumb once more and settled into a nervous and disturbed sleep.

So, tonight I decided we'd give it a go, but give up at the first vomit or scream. Mild battles at bedtime are one thing, but having a child afraid to go to sleep is another entirely. And I put it on, and she told me she was going to be sick, and then decided she just had tummy bubbles, so I vented her. And ten minutes later I vented her again, and we counted all the things I need to do before I go to bed myself. She selected a mildly squishy toy to cuddle up to to compensate for the thumb. And then she went to sleep. Wearing the mask, with no more argument.

It may, of course, have had something to do with the fact she lost a tooth this afternoon. And "Mummy, when I am asleep will you be the tooth fairy for me please?" She does have a couple more wobbly ones, but I don't think knocking a tooth out every day is necessarily the way forwards.


*Actually, this one could be a pro.


Sleepwalker said...

Big hugs for Little Fish and Mamma.

Ashley said...

Oh, Tia... Big hugs.

Lucia said...

I'd be afraid to put that mask on too especially if it covered my eyes. I don't like not being able to see. Hopefully she'll get used to the mask quickly, though. Sucking her thumb might not be good for her teeth, anyway. At least that's what I've heard.

Linda said...

I have no experience of these masks at all but here are a few comments (for what they are worth):

a) the design seems all wrong for a small child - covering the eyes, not allowing her to call for you etc.
b) surely the mask shouldn't fill with condensation - wouldn't this be unhealthy and a little frightening?
c)would the designer of this mask be happy to wear it all night, every night?

Becca said...

Tia, do you guys have any environmental controls in the Little Princess's room? She'd be able to push a button or switch to, say, turn music on, ring/call you and put lights on... as a grownup it'll be how she answers the intercom, makes calls, opens and closes curtains etc. from bed. Might be something of a solution to you not being able to hear you.

As a last ditch option to avoid thinking about trach, there's always the Cuirass option.

Hope she settles soon - I'm sorry this is all so horrible.

pippinsmum said...

Poor little princess, hope you find a solution soon

Alesha said...

Oh Tia, I wouldn't be able to wear that mask, either, I'm afraid. I know that does nothing to help you with the situation, but I was really shocked that it covered her eyes, too. {shudder}

Will be praying for alternate solutions for you both,


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