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Tuesday, February 12, 2013

Have You Hugged a Tubie Today?

It's feeding tube awareness week! Have you hugged a tubie today? I have!
There are many reasons why people have feeding tubes - accidents, illnesses, swallowing disorders, esophagus disorders, muscle tone issues, etc. But, just like a genetic disorder, having a feeding tube does not define who a person is.
Here is Rebekah's feeding tube story:
Rebekah is completely fed by feeding tube. This wasn't always the case. She actually came home from the hospital at 7 days old drinking from a bottle. Although it took a lot of energy and time to feed her those bottles, she gained weight and grew. 

At 6 weeks she got her trach and we got a g-tube at the same time because it was very likely that she would be unable to coordinate her suck/swallow with an open airway, as traches increase the risk for aspiration. She barely passed her swallow study, but we could keep feeding her orally! The only problem was that it took her twice as long to drink a bottle now because of the open airway (no pressure to help you swallow vs having the food/drink go down you windpipe) so feeding became a bigger challenge and was taking too many of her calories. So we supplemented with the g-tube since she had one.

Unfortunately, we went through a rough 3 months as Rebekah apparently had issues with her Mic-Key Balloon button g-tube. She kept popping the balloon due to great pressure in her abdomen and, because the g-tube stoma wasn't yet mature, we had to go to the hospital to get her g-tube changed in those 3 months. She must have popped at least 8 balloons and, the strange thing was, they looked blackened. In fact, someone at the hospital actually turned us into DSS for child abuse for "slicing and burning" her g-tube in "Munchausen by Proxy" fashion to get attention, I guess? Here we are with a child that wasn't supposed to survive, and we kept begging for answers to the g-tube dilemma, and we were being investigated for "child abuse". This happens OFTEN to families with disabled children. I am glad to say that the case was dropped fairly quickly as there was no founded evidence to support the claim and we had a list of doctors that wrote letters to attest to the great care Rebekah was receiving.

I kept pressing the doctors to change her g-tube and found some information saying that this happens in some patients, they cannot tolerate the balloon g-tubes. I also figured out that the dark look on the tubes was due to her Prevacid. Apparently her stomach acid reacts kind of funny with it and it turns really dark in her stomach and does not seem to digest.  But we were ignored. Luckily another pediatric surgeon listened to us and immediately changed us to an AMT non-balloon button g-tube. Although it is more traumatic getting it in and out, and we must do it at the surgeon's office, there was IMMEDIATE relief in Rebekah with the change. She used to keep her head turned to the right all the time and we thought it was 
torticollis. Turns out she was turning away from the pain she was experiencing which seems to be pretty typical in infants. The profile is lower than the Mic-Key and the material is more flexible. So this is better for being on the stomach too!  We also changed from Prevacid to Nexium and, guess what? No more black gunk in her stomach or on the feeding tube!

At 4 months of age, Rebekah was hospitalized for 2 weeks in the PICU with some major upper respiratory issues. We were not allowed to feed her by mouth and I didn't even think about giving her a passy to suck since she was pretty out of it. Well, 4 months is about when the infant suck REFLEX turns into a LEARNED BEHAVIOR. And guess what, we missed the boat. She forgot how to suck!! She started gagging on everything and would aspirate.

We tried many times since then to get her back to some oral feeds but our attempts were not successful. However, I am happy to say that Rebekah, at 45 months old, started sucking her thumb again all by herself! So there is still hope! But we will not push her because the feeding tube has allowed us to focus on other things and not worry about the hours of feeding time it would take per day. We are grateful for her feeding tube!

As a side note, a local friend's child was faced with failure to thrive/grow at one point and they considered getting her a feeding tube. One of their pediatricians actually compared the child to Terri Schiavo (the comatose patient whose family/husband battled over the decision to pull her feeding tube). I am sorry, but a person with a feeding tube is not the same as a person who is in a comatose state, unable to communicate with anyone. Not that I would want to make that decision either, but it is ignorance that leads to statements like that, and parents are then afraid to do something that will HELP their child. I am happy to say that my friend's child managed to thrive without the aid of a feeding tube, but we are very happy with our decision too and it doesn't make our daughter any less deserving of care or consideration. It doesn't make her less of a person!

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