From day 1 on tube feeding we knew we wanted to feed him a blended diet – real food, liquidised to go down his tube without blocking it.
However we had quite a battle initially persuading Sam’s clinical team to allow it.
Original guidelines stated only formula feed was suitable/acceptable for tube feeding – we argued, hard, that as his issues were not due to digestive malfunction, we should be allowed to give him the same food he’d had orally.
Despite initial resistance, the team soon came on board once they realised that we fully accepted the work involved.
We have never looked back!
In addition to the risk of blocking the tube, food safety is often cited as a reason why medical professionals are frequently reluctant to support a blended diet.
It's more than just basic food hygiene, which as parents we already adhere to, but ensuring that feeds are cooked through thoroughly before being rapidly cooled and frozen within a very short time frame if they aren’t to be used immediately.
Once we signed various forms confirming that we accepted the risks (pretty much saying if the tube blocked or he became sick then it was our responsibility not the hospitals… fair enough), we were good to go.
Our dietician advised on a suitable blender to liquidise even the most tricky of foods - I give you the raspberry seed... perfectly sized by nature to block a PEG perfectly if not obliterated first - and off we went.
Although it is a lot more work than just making up a formula feed, the benefits of giving our boy real food are huge.
His reflux has improved, as has his digestive function (we reduced his Movicol from 4-6 sachets daily to 1-2).
We discovered certain foods worsened his seizures, so we just cut them out.
Despite the initial dire warnings about food hygiene and risk of infection, Sam has actually been healthier since starting blended feeds than he ever was on 100% formula… he just didn’t tolerate it.
And we haven’t had any feed-related blockages (just meds… gah!).
The food hygiene aspect can be quite intimidating initially but it really isn’t anything more than you would do anyway – making sure to store the food appropriately, hand washing and maintaining a clean kitchen all being the main areas to take care of.
We have a very supportive dietetics/gastro team so Sam’s meals are evaluated by his dietician periodically to ensure he’s getting the right stuff in the right amounts.
But for me the greatest benefit is seeing my child thriving, and being able to prepare his food like any mother.
It’s the little things like this that make such a difference to us special needs Mums.
After so much has been taken out of our hands it’s wonderful to be able to take back some of the tasks other parents take for granted.