|A PEG. |
The bit bottom left is what goes inside.
Currently, she is having four feeds of 'milk', a bit like Complan, every day. It is perfectly nutritionally balanced, 1.5KC per ml and is vile, sticky stuff that is hell to get out of clothes and carpet. We have agreement from our dietician to feed BD for two of her 'meals'. The risk is that if we don't whizz it up enough, it might block the tube. Having a button that we can replace without a general anaesthetic is therefore a plus in that situation.
|Button, held in place |
with a water filled balloon.
However. Getting it all sorted is a nightmare. We are under the care of the terminally ill children's team at Musgrove Park Hospital. They are called The Compass Team and are a group of skilled, patient and talented Community Nurses, with additional support staff - counselling support for families, that sort of thing. They weigh N, they are our point of contact for the medical stuff and we rate them highly.
They cannot train us to use N's button, because that has been outsourced.
The training has to be done by the Nutricia Nurse. Nutricia also make the 'milks' that we feed down the tube and we order our milks and our syringes and feeding gubbins from them on a monthly basis. The Nutricia Nurse was unable to arrange to go in to school at short notice for training and so far she has also been unable to come out and show us how to check the fluid levels in the balloon that keeps the button inside N's tummy. We tried to meet yesterday, however, she was unable to book a room at a local GP surgery to hook up with us and SHE CANNOT PRACTISE AT MUSGROVE PARK HOSPITAL, which is where we were, sorting out N's splints, of which more in a separate, equally frustrated post.
It is *insane* that this has been taken away from the competent, involved, local Community Nurses and given to a private company who have staff that cover an area from Gloucester down to Devon and it is *insane* that there is demarcation that prevents them offering feeding support at local hospitals and that technically, the local Community Nurses cannot offer that support to us. I am not implying that the Nutricia Nurses are incompetent - quite the opposite - it's the system. The Nutricia Nurses should be part of the Community Nursing Team, not employed by a private company that is making money out of my child's inability to eat.
Because, in addition, the Nutricia Nurses are not allowed to train people to feed Blended Diet. They are only allowed to train people to use the 'milk' formulae that Nutricia sell.
And school don't want to put blended food down the tube unless they have been specifically trained to do so by a professional - understandable because of their insurance and H&S issues. But the training professional is not allowed to deliver that training, despite the kit N now has being rated to use for Blended Feeding. Because in the US, Blended is the way most families go; because their insurance doesn't cover the £6,400 per year it costs to feed a child the size of N on the milk formula. With older children, it can be twice that amount or more. Here's the link to the Nutricia website where you can see the prices.
The cynic in me thinks that Nutricia has a financial investment in preventing their Nurses training for BD.
I am deeply angry that Nutricia are putting barriers in place that prevent my child eating what we, as a family, want her to eat. Nutricia are controlling N's diet because they refuse to deliver that training. If we want to feed her BD at school, we can go in twice a day to school to feed her. But that's just not practical. The brief period between 8.30AM and 3PM four times a week is all the time that B and I have to sort our lives out; that includes all the admin associated with N's condition, co-ordinating the thirty-plus professionals involved with her care; catch up on our sleep; and, god forbid, earn a living of some sort.
So at the moment, our compromise is that we are going to send in two milk formula feeds for her to school and feed the BD morning and evening. I don't have it in me to fight this battle at the moment - there are other parents out there that are doing this and trying to get NICE involved. I still want to register how ticked off I am at the sheer inefficiency of the system.
I have upcoming posts about Orthotics and Make A Wish. Just putting that in here as a mental note to self.
For today, that is all.