This time last year, the only experience we had had of tube feeding was when Rory and Alfie were in SCBU as new-borns.
But in the last year, everything has changed.
We have done NG tubes, NJ tubes, G-tube, and GJ-tubes and now we are back to our MicKey button.
So, I thought I would write about what we have been through, to hopefully provide helpful (rather than clinical) information to anyone who may be at the start of their journey.
For us, any type of nasal tube was absolute hell for a multitude of reasons.
We did NG tubes for roughly 2 months and though they are easy to use once passed, the trauma of having the tube passed was truly horrific, and Alfie struggled to tolerate the tube when it was in- we never managed to keep on in for more than 12 hours which would mean a new tube had to be passed each day.
For NG feeding, the steps are PH test, flush, feed, flush, finished. Simple and easy, though gravity feeding takes its toll on your arm!
NJ is similar, but significantly different all at once.
Any feeding tube that is jejunal requires the feed to be done very slowly as the liquid is going into a small part of the intestines called the jejunum, rather than the stomach.
For those suffering severe reflux, it can be ideal but is not without its problems.
For NJ tubes, the passing of the tube is not easy, the tube must be ‘floated’ down gradually, which means an NG tube with more length being pushed further down every half hour or so until it goes into the jejunum, and this is confirmed with an x-ray.
We never had one successfully passed with Alfie as each time they tried, Alfie either ripped it out, or the tube wrapped back up out of his stomach into the oesophagus rather than going into the jejunum.
We did, however have a GJ tube (gastro-jejunal) tube for quite some time so have had our fair share of jejunal feeding, and I must say, it was tiring.
Jejunal feeding is nearly constant.
Alfie was fed for approximately 19-20 hours a day and the bowel movements are something else (picture poo everywhere several times a day!).
It was also worrying as there is always a tube around for little hands to pull or to get caught on something when playing, so we never felt at ease.
Finally, there is the MicKey ‘button’.
Our little, ‘low’ maintenance feeding tube. Though it has been the best fit for us, it is still tiring sometimes.
Each week we have to check and change the water in the balloon which is nerve wracking as that is how the tube stays in place.
But on the whole, using the tube is relatively easy.
You attach the extension to the button, vent the stomach if needed, flush, feed (we use a pump or syringe dependant on feed type), flush and detach the extension.