I am going to give a disclaimer here: this is purely our experience, and we have worked through this with the support of Sam's medical team. Please do not make any major dietary changes without first consulting your medical team.
For many dieticians, the Blended Diet is the work of the Devil himself it would seem. And yet it is a simple thing - real food, blended to the consistency of single cream, and put down a feeding tube.
No voodoo, no additives and not a bottle of formula in sight... And yet not much is really known about it in medical circles currently.
All that is steadily changing however. I’m a scientist and I cannot help myself; I research. I read. I make it my business to know EVERYTHING about my child's care, his medications, needs and like every parent of a child with a health condition I have become an expert on him and his needs.
To me, learning that Sam needed a feeding tube tore my heart out - suddenly I was no longer able to feed my son and had to rely on artificial formulas to sustain him.
I positively balked at the idea, and wanted to know what if any alternatives were out there. I very quickly discovered a group of like-minded parents on social media (seriously, HOW did we cope before Facebook etc?!)... I learnt as much as I could, then approached Sams dietitian.
She was, understandably, reluctant initially. After all, the NHS and British Dietetic Association (BDA) do not support the blended diet, and maintain that formula feeds and nutritionally complete and are the only feed suitable for tube feeding. And I have two words for them. Bog off.
After chatting a while with Sams Gastro and Dietetics team, we have a Plan to start blending his meals as soon as a risk assessment is in place. I get that, they need to protect themselves and Sam, if we block his tube with feed that we haven’t liquidised properly it could put him in the position of needing another general anaesthetic to replace the tube; not something any of us want to put him through.
We have discussed blenders, food hygiene and maintaining a balanced, healthy diet. All this is good stuff, because Sam does NOT do well on formula; since going onto enteral formula (even the hypoallergenic ones) he has suffered an exponential worsening of his reflux, seizures and his general health has deteriorated.
So, we were waiting patiently for all this to be put in place in the next few weeks, ready to start reintroducing him to real food. One of the conditions the hospital required fulfilling was that we needed to get hold of a high speed, powerful blender - a Vitamix. These awesome machines command an equally awesome price tag - £459 :/
However, we had fundraising in place and were able to get hold of one pretty quickly.
This blender is phenomenal - pretty much anything that goes in comes out fully liquidised within seconds. It turns solid vegetables, meat, fish, fruit, nuts etc into a beautifully smooth, lump and bit free liquid, suitable for passing down a narrow peg tube... And this week, we started.
Sam had his first proper food in almost 3 months, blended baby food pouches (I think I love Ella’s Kitchen) made up to the correct consistency and calorie content, then passed through a sieve several times to ensure it was COMPLETELY smooth. First issue - volume.
Noted that I need to discuss this with dietitian, as it takes almost twice as much volume than formula to get the number of calories Sam needs.
Ah well, it's a learning curve after all... made up all of Sam's feeds for the day in this way, now have an agonising wrist due to all the sieving! I cannot tell you how scary it was the first time I attached a 60ml syringe with the feed to Sams feeding tube and started to gently, slowly plunge the feed into his tummy.
And the look on his face was priceless.
You see, our sense of taste is intimately linked with smell - think of how your food lacks taste or tastes different when you have a blocked nose - and Sam could SMELL the food.
He started to make mouth movements as if he was enjoying his food orally, not just down a tube.
He started to grin.
Then he burped, and grinned even more (think taste again).
There was no doubt that my boy approved of this new development ;)