Feeding tube progress

Well, everything Ryan said in the initial post was very true...and I wanted to step in and give you an update! He mentioned that hopefully the feeding tube would be a thing of the past within a year if things went well, which seemed like a realistic and hopeful goal at that time.

Yet we are absolutely pleased to report that Wednesday will celebrate three weeks of Ryan eating and drinking on his own, with no tube feedings!! Thankfully during that time he's also become a more effective, slightly less messy eater! He's also not waking up at 4 a.m. asking to eat quite as often either, phew!!

We do continue to give him 4 ounces of water via his feeding tube at night to assure that he gets a little extra hydration...but we are hoping that we can stop that soon too. We do this while he is asleep and unaware of it so that there won't be the risk of additional emotional attachment to the tube feedings. The water going through the tube is also a good way to keep it clean and avoid infection. We do not plan to have to resume tube feedings but we will not remove the tube from his tummy until we are certain he's not going to regress. Additionally, if he were to get sick and need additional hydration we would have the ability to do that, and so we'd want to wait until flu/winter season is over anyway.

When it's ready to come out it will just become a tiny scar, and a distant memory of the medical technology that helped him survive and get to where he is today.

The decision to do this came about when Ryan began drinking effectively out of a straw. It was difficult to know when and how to begin the process, but evident that he was becoming somewhat emotionally attached to it as one might with a bottle or pacifier. Also the tube feeding was faster and easier for him and often times he would just point to where we hang is feeding bag, and ask for us to hang it so he wouldn't have to put the effort into eating. He is smart enough to understand this, and with each passing day we knew it'd be a harder habit to break.


My research had told me that "so many children who are capable of eating on their own, whose core issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life."

This hit home with me and I knew that since he had become 100% capable of eating AND drinking, seems to feel and respond to feelings of thirst and hunger, and was eager to eat and be part of family mealtimes that it would be unfair and limiting to him to continue the feedings.

I had also read that over time if parent/adult expectation and pressure to eat independently build up too much that it can cause a child to resist autonomy, and that "since giving tube feeds can provide attention this can result in a secondary gain. We really wanted to avoid this situation.

We couldn't be more proud of him. We are quite thrilled about the 3 ounce weight gain he has had since last week!! After last week's weigh in he had lost an ounce, and the doctor mentioned the possibility of re-starting tube feedings if he were to lose any more weight (even one more ounce). This, quite simply, would be heartbreaking. We knew we'd have to stand firm and make sure parental instinct was fully in tact, because we had no plans of re-starting tube feedings...regardless of what that scale prounounced or the doctor had recommended!!!

As long as Ryan remains healthy, hydrated, eager to eat and drink, and maintains appropriate response to hunger and thirst...it would be unfair to let him turn back. Especially when he is now fully capable of moving towards the independence he surely desires!!

He continues to remain strong and walk well with a walker. I learned today that his physical therapist is starting to work with him using a quad cane (cane with 4 prongs on the bottom)...wow, I am eager to see him progress to that on a regular basis!


Well, thanks for listening and I know there'll be plenty of exciting news to follow!!!