This week is "feeding tube awareness week"! I never thought I would have to raise awareness for such a thing. As many of you can remember I had so much anxiety to go through with a feeding tube for Ailyn. I was afraid of it. I did not know anyone with a feeding tube. I had never known much about one. The GI was great and explained it all, but as soon as I left the office I felt I forgot everything she had told me.
Daddy and I talked very long and hard about it. We decided to hold off as long as we could. We tried to teach Ailyn how to eat and tried to get as much Pediasure in her as possible. But, we had no luck. She had problem swallowing solids and she drank her bottles too slow. When she fell off the growth charts I called the GI and said "We are ready".
The surgery required a 3 day stay. They placed a PEG tube for the first 3 months.
Recovery was HORRIBLE for the first 24 hours. I felt SO bad for her. Morphine worked very well to knock her out but when it wore off she was so sore. BUT,
1 day later I got my old nugget back!! She amazed me. She was still very sore for a few weeks but after that it was just like another "leg" on her body.
For the first few months the site would grow "granulation tissue" which looked disgusting.
At 3 months she got a mic key button (a Gtube). SO much easier!!! Except...... I have to change it myself!!!! The first time took me a week to finally do it. I am part of a Facebook feeding tube support group. One Mom posted a video of her changing her sons Gtube. If it wasn't for that video, I would have had to take her to the doctor to change it for me. Now a year later I am a pro at it! The Gtube needs to be changed every 3 months and the water balloon needs to be changed every 2 weeks (stop back later in the week for that post) As far as infections, Ailyn has had 2 minor infections. The doctor gave us a few tubes of medication just in case it happens.
I get the same questions all the time.
How long will she have the feeding tube?
Not sure! It all depends on Ailyn. We are trying hard to get our insurance to cover the feeding clinic. It's an intense program that is every day 8am-4pm for 6 weeks. For now we are waiting on an feeding OT evaluation at the local pediatric hospital where Ailyn has PT and speech. In the past two months she has been doing awesome with swallowing food. She begs to eat lunch and dinner. My goal for 2012 is to get this feeding tube OUT!
Does she try to pull it out?
YES! But, she can't. Well..... I am sure she could if she really tried but it starts to hurt and she stops. I will blog more this week on the Gtube. I will explain what it looks like. But, it has a balloon filled with water. She touches it all day long. It must itch because she is always scratching around the site. She has to have the port open. When we close it, she opens it right back up. Nothing can get in it so it's safe.
How much weight has she gained since she got the tube put in?
17 pounds!!!!!!!
Check back soon for another feeding tube post! I want to help others understand what I didn't going into it. Hopefully none of you will ever have to deal with a feeding tube. But, maybe you can pass on my info to others who may need it.
