A friend of mine recently spoke to me about their concerns over the gastrostomy as they are now entering this journey with their own child.
It made me look back to our decision and the fears that came with it.
I almost look back and wonder what all the fuss what about, but the truth is that everything new can seem so huge and unbearable to process.
The biggest reason for deciding on the gastrostomy was his aspiration that was leading to one too many chest infections and making Zachariah’s life too much of a struggle.
Last winter he experienced around 10 chest infections in such a short period of time, whereas this year, bearing in mind we’re nearly entering December, Zachariah has only had 1 infection and has been keeping incredibly healthy.
The hurt I felt over not being able to feed him has almost disappeared as I see him looking so well nourished and able to enjoy his life more easily.
The fear over how I would actually manage the pump and tubes themselves very quickly vanished as it is so much easier than I ever thought.
In fact I would go so far as to say that it's easier now as we can set him up on feeds and carry on with activities whilst the milk is nicely pumped straight into his tummy.
We are spending less time struggling with food and more time enjoying the things Zachariah loves.
Now, I'm not trying to sell this to you all, as this is a medical urgency that was presented to us through Zachariah’s struggle with oral food, this is a celebration of Zachariah getting everything he needs safely and less traumatically.
I’m hoping to put all you at ease, who may be starting those very difficult conversations with your child's consultant.
If this is you, I’d like to just give you some advice.
- Ensure you write a list of questions for your meeting with the consultant/surgeon. No question is a silly question, so make sure you ask everything that is important to you.
- Take someone with you for support and an extra pair of ears, as if you’re anything like me, you’ll forget half of it.
- Make sure you understand the procedure, (ask for diagrams if necessary), the aftermaths of it and the logistics of it all when you get home. There are some great groups out there that can give you advice and support.
Really hope this short blog will help at least one family and give them comfort that tube feeding is not a scary, lonely world, but in fact of world to conquer if your child needs to enter it.
(The picture is of Zachariah having stories read to him in the library whilst enjoying his lunch)
Much love, Rochelle (My Daily Miracle).
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