Loving and hating the tube

I really do not want Lil Z to be on a feeding tube. There are lots of reasons why, but the main two are that I don’t want her care to be further medicalised and because I don’t want to deprive her of food, which can bring so much happiness and enjoyment. The Prof agrees with me. He believes that feeding a child is an important bonding process as well that is highly beneficial. So, we’ve tried everything to try to avoid tube feeding.

And it has been exhausting. Since it has also been the topic of a number of previous posts, I won’t go into just how exhausting and demoralising and frustrating it is. And that is without touching on trying to give Lil Z her meds, which was often the equivalent of waterboarding your own child. It was all well and truly unsustainable. And so, we have a tube.

And it is brilliant. Lil Z gets the calories she needs, the fluid she needs to keep her hydrated, the full doses of all her meds. After a month of dehydration and extremely low-calorie intake, where she lost over 1kg, she is filling out again. Her tummy is chubby instead of concave, her cheeks are round instead of hollow. And she had energy again. She doesn’t nap for over half the day. Instead, she’s aware and alert and generally happy.

Before Christmas, we have an appointment to have a serious conversation with The Prof about PEG feeding. It’s possible that a few weeks break from oral feeding will do her good and she’ll start taking bottles and puree again. But I don’t think it will be the case. I suspect feeding tubes are here to stay – at least for the time being.

That thought both depresses me and gives me a feeling of relief. The tube and me, however long it will be, are going to have a love – hate relationship.


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