A rare life – day 3

Life with Miss Z can be quite messy. One of the less pleasant aspects of Miss Z’s life is her inability to manage her secretions. “Secretions” is one of those vague, polite words that actually mean the phlegm, snot and saliva that build up in the back of her throat. Most people swallow regularly throughout the day and so don’t even notice it, but Miss Z rarely swallows, and when she does, it often isn’t effective enough to get much down.

So, the secretions just sit there. You can hear them rattling in her upper airway. They make her cough. Eventually, she will cough, and then gag and then retch and vomit, getting rid of some of the goo. The rest ends up aspirated into her lungs or up into her nasal passages. The stuff in her nose gives her sneezing fits. The stuff in her lungs causes chronic respiratory infections.

Think of that horrible, congested feeling you get when you have a bad cold. Well, Miss Z has that feeling every day.

The tough part is that there isn’t anything that can be done to fix it. Her GJ tube will stop her refluxing and aspirating her food, but not her secretions. There are drugs that will dry up saliva which are used with kids who drool excessively. But Miss Z doesn’t have excessive saliva, she just can’t manage her ordinary amount. And the doctors are concerned that drying up what she has will only make the secretions thicker, which means she won’t be able to bring them up as easily. And if this happens, she will have the sensation of not being able to breathe in enough air, which to me sounds like the stuff of nightmares.

At the moment, we address the problem by using Ventolin (a drug many people with asthma use) and a special saline solution in a nubuliser. For those who aren’t familiar with them, nebulisers are (noisy) machines that administer medication by turning it into a mist to be inhaled through a face mask. The Ventolin is meant to open her airways, whilst the saline thins the secretions, making it easier for her to cough them out.


Not fond of her nebs, our Miss Z

When using nebulisers and throughout the day as she coughs and vomits, we rely a lot on our suction machine. This is because her secretions can be quite thick and gooey, so she often needs help getting rid of them. We suction them from her mouth and her nose.


Suction machine and a sick bag – they go hand in hand

I used to be quite squeamish about sticking a tube down Miss Z’s nose to suck out the snot. Used to be. Now I am the nasal tube master. I can do it on my own (even though Miss Z puts up a good fight). I have done it while she’s asleep – and not woken her until the suction machine roared to life. I’ve even done it in the middle of the night when I probably wasn’t fully awake.

We have also learned to always have a sick bag on hand, as Miss Z is fond of the stealth vomit, where she sounds fine one minute and is projectile vomiting down the front of your shirt the next. So, if you visit our house, you’ll notice strategically placed sick bags in every room as well as the car. We have learned from the Boy Scouts – its always best to be prepared.

Her secretion management problems (aka coughing and vomiting) also makes it tricky to take her out and about. I’ve learned to more or less ignore the surprised looks when Miss Z starts retching and gagging in the middle of a shop. However, Vegemite still gets very embarrassed when her sister starts throwing up in public.

Rare may be beautiful, but no one said it wouldn’t be messy, too.




One response to “A rare life – day 3

  1. Thank you for sharing your life . I have lot of respect for you . I pray God to give you strength and good health .
    Lots to love to Miss Z . I feel why she has to go thru all this ..It makes me cry .. Hugs


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