Oops

What did you do on Saturday night? Something nice I hope. Me? Thanks for asking. I performed a minor medical procedure. Yep. Pretty hard core around here. It was so smooth. We rocked it. Let me take you back to when it wasn’t so harmonious.

Thankfully we have only dealt with it four times in 12 years…well now five times. But still. Missy is fed via a tube directly into her stomach. Her PEG stays put thanks to a little balloon of water on the inside. It is a tentative hold which, unfortunately and dramatically, can come unstuck. If the stoma is left for too long {read~more than two hours} without a tube the hole will close and surgery is then required to reinsert it.

The first time, I received the call while with my older child at the skate rink. “She has pulled her PEG out. I have called an ambulance but they won’t come. They say it’s not an emergency.” Instantly I was cold but sweaty…my mind racing. I had the accessible car. It would have to be a “game” of tag. A fast game as I pictured my daughter’s stomach contents oozing through a well placed cloth and the threat of surgery loomed. The skate rink staff {strangers} had to supervise my boy and his friend during their lesson as I drove quickly and sensible-ish home. I thanked the support worker for doing all of the right things without help from the professionals she called. Tag. She raced off to meet the boy as the girl and I, with supplies a-plenty, headed for the hospital.

The second time Missy was with a support worker as well {poor things}. I was away from home…again…but close by. This time her stoma had less of an ooze, more of a fountain. We got her into her wheelchair with much padding, towelling and taping over her stomach. Plans were made for her brother to be looked after and we were ready to tackle the hour drive to the hospital. He noticed it first {her brother}. “What’s that on the floor?” After much “eewwwwwing”, we added more padding to an already padded up kid and cleaned the floor. How could one tiny stomach expunge so much liquid? The girl? The least perturbed of us all…as usual.

I distinctly remember being puzzled as I drove along the freeway as to why my adrenaline was pumping so hard. Usually by the time we are heading to the hospital in an urgent manner I feel the little relaxation a plan in place provides. But usually in that scenario a paramedic was driving with another in the back giving expert help to my girl. Being driver and carer with the constant rear vision checks was a little more stressful {that is…a lot!}

The worst part of the experience this time? It was my fault. I got her out of her wheelchair without checking her feeding tube. I pulled it out when lifting her. The only sign was a disturbing squelch. Mor-ti-fied! She did not make a sound. No complaint. Not even a grimace. She was smiling. Smiling! {Luckily}. And thankfully she was laying flat with clean cloths at hand to cover her stoma which was barely oozing much less a fountain. Also I was lucky to have help close by…a big brother runner to grab more help.

You see after many years of reluctance (I do so much medical stuff already!) I finally did the training. When I say I, I mean we. The new bloke in our lives not only gently suggested learning to replace Missy’s PEG must be better than a rush to hospital but he insisted on completing the training with me. So with my head in the right space and armed with a supportive partner we trundled off to the Children’s Hospital. It’s not a fun thing to do…it is a bit oozey and I am mindful of not causing her any pain…but it’s do-able. It’s do-able and preferable to the previous stressful hospital trip…and it’s empowering.

The girl has never been able to safely swallow. That can happen with severe Cerebral Palsy. The amount of muscle coordination involved in a swallow is staggering. From birth she fed through a nasogastric tube until having her first PEG surgically inserted at 9 months of age. She would love to eat through her mouth but food goes straight in to her lung so a tube is the only safe way to deliver nutrition. Meal times are such social occasions though so our choice, and her joy, is to have little tastes. Babychinos are her favourite.

In the early days when a tube was stuck to the delicate, pale skin of her cheek many assumed she was sick. One lady (I use the term lightly!) in the queue at the bank even hissed “take that sick baby home” at me.  Sometimes it is just necessary…whether temporarily or on a more permanent basis…to be fed with a tube. On the back of last weeks “Feeding Tube Awareness Week” I am proud to say  that I love a  tubie and I can even change that sucker over now!

 

 

For more information have a look here. This isn’t an Australian group but I didn’t find one that was just relating to tube feeding. If you know of one please share. 🙂

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