Tube feeding

   Kylie was able to avoid having a feeding tube until 2013. Drinking from her bottle became difficult even though we tried thickening the liquid. She spent more time coughing on what she was drinking than she did drinking.  That was because she was aspirating which causes pneumonia. It got to the point where she was in the hospital regularly.  So, November of this year Kylie had a gastrostomy tube put in. It's a very simple procedure and not very invasive. It only took an hour. The surgeon said he had to do a little extra tugging because her tummy is so small.  Later we learned that meant more pain than usual.  Being that Kylie was his last surgery of the day he left only having given orders for Tylenol.  That was not doing the job. She cried for an hour and a half by the time orders were sent for stronger meds and the hospital pharmacy actually filled it.  Lesson learned.....always plan with the surgeon what will be the back up plan in case first medication is not working for pain.
    We stayed an extra night in the hospital because she needed to be on the stronger meds.  As we prepared to go home, Kylie' s heart rate slowed down.  After a few hours of being off the meds and some oxygen she was back to normal.  Back home we went to try out our new gadget that would make our life a little easier and help our princess stay healthy.  It took only a week or so to get the groove of it.  Then I got to thinking, if she can't taste what she's eating then why should she be having 18 grams of sugar in every feeding?  Well, the answer is....because it's a cheap way to boost calories!  Formula is big business and as with everything else in this crappy world, it's all about the moolah!  (my biggest peeve)  As I hate being a gullible yes man, I did some research to see if there were any alternatives.  There is a good company in the works out there who agree that the choices out there for tube fed people are lame. They call their formula "Just Food"  It's real food!!!   Bravo!!!   Just seven ingredients in each , all of  which can be easily pronounced and equal a whopping 350 calories!!!  As far as I can tell its not available to get yet but it's nice to know SOMEONE sees the need.
       Here's the next best thing,  Raw Food Meal Replacement powder made by Garden of Life.  It is pricey but well worth it knowing you are providing the best nutrition possible.  Two good places to buy it are Amazon and Vita Cost.  One or the other is always offering free shipping or other incentives.
        The challenge with the raw food powder is the thickness. You definitely have to push it through rather than using gravity.  It was still a struggle to draw up into the syringe, nearly impossible,.....then the epiphany...Olive oil !!! Just rub a few drops around the inside of the syringe and the rubber part of the pushy inny thing and voila.....Easy!!