I had huge hopes of posting daily blog updates during the whole of Sophie's inpatient tube wean, however lack of internet and signal put a stop to it.
Frustrated doesn't even come close to describing my feelings about that.
The reason I wanted to document the whole journey was to help others above all else.
We started this journey 5 years ago and it has been a very long and rocky road in which we have travelled. Many tears have fallen, lots of anxiety, arguments with health professionals and no one who we could conclusively say would definitely be able to help Sophie become an eater.
This is the main problem in the UK.
Where do you go and who do you turn to when you have a tube dependent child?
You can search the internet until your fingers go numb but nothing in the UK stands out. All you find are the many feeding centres abroad which cost a lot of money to attend and leave you with very little follow up once you return home.
Doctors are very good at formulating a plan to ensure a child doesn't completely starve to death ie insert a gastrostomy or NG tube, and very detailed guidance on how to care for the tube, however you will never receive a detailed plan on how to succeed in weaning your child off of a tube and re establish oral eating when the tube is no longer needed.
Here lies a huge problem which actually affects more families than you think.
Sophie wasn't a fussy eater, she was tube dependent and missed all of her developmental stages regarding eating due to oral aversion (oral phobic). This was the main problem, she had absolutely no concept of what eating was and what she had to do. These milestones are learnt during the first year of life, but due to Sophie's severe reflux she stopped having anything in her mouth and missed every experience needed to form the basic groundwork every human being needs, to know how to eat.
Where on earth do you start in teaching another person to eat when the only experiences they have had have been negative and painful?
This was where we were stuck and almost helpless. That was until we met Clarissa Martin.
Clarissa has been the feeding psychologist I have referred to for quite some time now. She has helped guide us to prepare Sophie for a time when we collectively thought she was ready to be tube weaned. Run too quickly and the process would fail, leave it too long and the process would be too late.
What a quandary eh?
Clarissa didn't work alone in the lead up to the in patient tube wean. She had drafted in the help of Dr Terry Dovey who is also a psychologist and was actually the missing link we needed to give Sophie that extra push needed.
Together they formulated a plan and both were present for the tube wean.
The end result being...
Sophie has now been tube feed free for over two weeks and is EATING.
I don't just mean drinking supplements, eating liquid foods or licking solid foods either, I mean actually eating!
She eats toast, biscuits, crisps, fish fingers, fruit and you want to see her get down a sausage roll. Currently she is exploring everything and trying whatever she fancies and I have to say it is an absolute joy to see.
Soph still has a very long way to go, she's moving through the stages of eating in a matter of weeks where all other children have months and years of practice and preparation. We probably wont relax for a good year.
Her gastrostomy will stay in for a while just in case things change dramatically or she becomes very poorly CF wise. We need to see that she can cope when poorly and manage to maintain eating even if just in small amounts.
Although this journey hasn't fully concluded we are very much on the homeward step and we cannot thank Terry and Clarissa enough. Sophie will still have many ups and downs as she works through the stages of eating.
Psychologists have terrible reputations when it comes to feeding disorders but I just want to tell everyone I can that this isn't the case with these two.
Sophie was calm and happy for nearly the whole process, a process in which her whole world was turned on its head. For her to be able to come through this happier than ever is down to the way she was looked after by Terry and Clarissa.
I really just want to conclude by saying if you are a family in the UK in a position where your child is tube dependent you are not alone. There is help available and Terry and Clarissa can both be contacted for possible consult :-
Terry Dovey via LUCRED: firstname.lastname@example.org
Clarissa Martin at midland psychology: email@example.com
Thank you Clarissa and Terry and thank you to Sophie's amazing CF team who also provided constant support throughout the whole process.
I haven't documented exact details of the process and protocol Terry and Clarissa devised as it was tailored to suit Sophie and every child is very different, but if you have any questions about the process then please ask :)
Taken from my personal blog Lungs Behaving Badly.