*there's that tube

In February when I was writing about Congenital Heart Defect Awareness Week there were families celebrating Feeding Tube Awareness Week. I don't know why it surprised me to learn that there was such a thing. I have mixed feelings about the tube so I guess people like me are the reason there needs to be an awareness week. My avoidance of talking about Will's tube has probably kept everyone from understanding what it has been like for us. I'm glad there are people that celebrate their lives with feeding tubes but I haven't been able to do much of that yet.

Here is some of my frustration: it is one thing to be born with a medical diagnosis, but a feeding tube is something that doctors decide to do. It is a solution to a problem. Don't get me wrong, it was the right decision for Will. My problem is that when the original problem is solved we are left to figure out what to do. On paper it looks like we have all the help we need:
a surgeon
the nurses in the surgery office
a pediatrician
a few visits from a home health nurse
a gastroenterologist
a nutritionist
and a speech-language pathologist for feeding therapy.
We have had those typical resources plus a home health company for monthly supply delivery and a long time friend of mine/SLP that will answer my questions any time (thanks Jill). But the effectiveness of this "looks good on paper" help is all over the map. And unfortunately Jill can't move in with us and take care of this for us.

My reality has been many, many phone calls and appointments. But despite all of this constant communication I still feel lost most of the time. I remember asking Will's pediatrician, "Who is in charge of his feeding tube?" I think it is sad that I even needed to ask that question. We were at home with a baby and very little instructions and we were wondering who was supposed to be helping us? The answer was even worse: "I think you and I are." Although we know a lot now, at the time we was not qualified to be in charge of that tube. And although we get an enormous amount of attention from the pediatrician she lacks the specific experience of the daily ins and outs...so basically she and I are Will's feeding tube triage service. We are obviously getting it done in our own time but I don't think this is good enough. For example, I once had a question about how to keep Will from getting tangled in the tubing while sleeping. Our solution? Ask another parent. Where did I find most of the parents with this knowledge? The internet. Do you see what I mean now? My help is coming from untrained (however experienced) strangers on the internet?? I will be forever grateful to those that have reached out to help me. And I am happy to do the same for others in our situation, but with all due respect to them and myself - there has got to be a better way!

There seems to be a new awareness with parents that the long term developmental affects of tube feeding and the lack of solid solutions for feeding tube dependency aren't getting enough attention. Again, the doctors are doing the right thing because they are keeping kids alive with these tubes. But once the kids are ready for oral feeding like Will, it doesn't seem like sufficient support is out there. I don't know what sufficient support is but for starters, a better answer to the "Who is in charge of his feeding tube?" question would help. In the meantime, the phone calls and appointments will continue and I'll keep utilizing these families with experience.

I've seen that many people in the middle of living with temporary tube feedings are struggling and frustrated with how to care for their child. (I say temporary because I believe we would settle into this life much differently if we knew it was permanent.) One huge obstacle is that every child is different and the best way to help them is almost impossible to predict. But there also seems to be a gap in the medical field. A team approach is good, but it seems to me that one key person is missing. I don't know what we would call them, and I'm guessing a new advanced degree program of some sort would need to be invented to create them. Then the insurance companies would have to agree to pay for them. Maybe I'm wrong and the current system is as good as it will get. But I still believe it could be better.

There is good news. This situation is looking up for Will. He will eat. Just not as soon as I wish.

I have added a link under the title of this site for feeding tube and therapy information. I complied the list with permission from other bloggers that have also done their own gathering of resources. Through this chain I hope someone finds something that will make their experience at least a little bit easier.

If you don't have a feeding tube in your life and want to understand it better there is a website I recommend: www.feedingtubeawareness.com. Go straight to the For Friends and Family page and read the whole page. Feeding Tube Awareness also has a great Facebook page. Many other parents there (from all over the world as a matter of fact) have said they also felt they were sent home with these tubes without a clear vision of how it will end. Or even what daily life will be like. Traci, the creator of the site, does a great job of collecting videos and experiences to share and has created what I think is the #1 place for filling the basic information and support gap.