Tube Feeding...

Erin has always had swallowing issues.  She wears a bib because she drools.  She seems to not be aware of it and doesn't think to swallow.  She has choked several times on different types of food, again it seems like she just isn't thinking about swallowing.  We know that she has aspirated sometimes, whether it be on her own saliva or drink or food.  In 2009 we were refered to the swallowing clinic and had a video xray swallow study done.  It showed that Erin's swallowing mechanisms were very weak, and that food and drink pool in her throat and that she couldn't clear her throat, causing some of that residual to run into her breathing tube (aspirate).  She would cough and sputter to clear the breathing tube, just as you or I would when your food or drink goes down the "wrong hole".  The occcupational therapist suggested we thicken all fluids and feed Erin pureed food.  She talked about looking at putting in a "G" tube for Erin's feeding, but we decided not to go that route, and Erin was getting pneumonia less and less, so the aspiration must not be happening that much anymore.  Erin wasn't coughing and sputtering as much, combined with less pnemonia, we thought we were in the clear.

I called for another appointment with the swallowing clinic early this year because Erin seemed to be choking on food that shouldn't make someone choke.  (ie: pureed)  They were all quite concerned about our Erin.  She is quite skinny, and is falling off the normal growth and weight curve.  (When Erin gets sick she loses weight rapidly and its hard work for all of us to make sure she regains.)  They booked another video xray swallowing study, and again talked about the "G" tube.  I was determined not to have to go down that road.  As a mom I couldn't imagine Erin not eating by mouth.  Our family is very close knit and we often operate around the dinner table and food.

So, yesterday was our video xray appointment.  In the last 2 weeks, since the first appointment, Erin has done SO well!  She has been eating like a horse!  She has been very healthy and very happy!  I haven't weighed her but I am sure that she has gained 5 lbs in the last 2 weeks.  I was convinced that the video xray would show how great Erin was doing, and that there were not going to be any issues.  Remember, I was determined going in to that appointment that we were not going to have to tube feed Erin.

The OT saw different.  She was wonderful!  She found a co-worker to sit and talk with Erin, so that she could talk to me one on one.  She showed me the videos of Erin swallowing.  I remember what those videos looked like in 2009, and yesterday her swallowing was way worse!  I was shocked at how much food was going down her breathing tube!  She doesn't even cough that much, I'm assuming because it doesn't bother her anymore.  I felt horrible!  All that food in her lungs is a catastrophy waiting to happen!  This may be why Erin has a hard time gaining weight, her body is using all that energy to fight off what is happening in her lungs.  We switched to nebulizer treatments instead of puffers about a year ago and it seems to be helping her lungs, but it is only a matter of time and the nebulizers wont be able to keep up. 

So, this will be our new journey.  Erin will be tube fed.  I don't know how I'm going to explain this all to her.  I hope and I pray that it will be something that she deals with quite well.  Around here the adults are ussually the ones who have the issues, when it comes to things related to Erin, and she just flies through these bumps in the road her happy self.  She amazes me and makes me smile every day! 

I will add more to this page as we travel down this new road, to let you all know how things are going.  For now we are waiting for an appointment with the surgeon, and I am feverishly reading material and "googling" information to help me prepare.