Friday, May 1, 2009

Mya got her button!

We ended up making an unplanned trip to Riley today! When I went to get Mya dressed...(yes it was like 9:30 in the morning I know what kind of mother am I!)...I noticed her g-tube was sticking out of her belly about a 1/2 inch and the tape was very loose. I called Matt to help me and we taped it back down.

I went ahead and called down to Riley to see what they wanted me to do. We have an emergency kit with us at all times if it were to get pulled out.....but was hoping I would never have use it! I ended up getting ahold of them and they wanted us to bring her down to play it safe!

There was actually only one stitch left holding the g-tube in so I think it's a good thing we went down! (The stitches inside were already dissolved and there was only one outside stitch left.) She was scheduled to have the replacement done next Thursday...but it was not going to wait that long. Mya also had some granulation tissue so they treated that while we were there also. Granulation tissue is pretty much extra skin that had built up around the tube. They put medicine on it to kill that tissue. If it does not work she will get another treatment when we are there next Thursday.

Switching the tubes out went pretty quickly.....Mya hated it though! Poor thing!!! I don't think the nurse was her favorite person!!! It looks good....just sore!! I'm sure she is going to sleep well tonight!

We are noticing a trend with her vomiting and the days she gets baby food. The more baby food she eats the more vomiting she does! I think we are going to take her off it again for the weekend and see what she does. Thursday's appointment with Dr. Dusick can't come soon enough for Mya and myself!!

Her weight was better as of yesterday! Thank goodness! She is about at what she was a month ago when she had the surgery! What a long road it has been and what a long road it's going to be! We finally get her interested in eating baby food and now we are taking it away again! One of these days we will figure it out!

One good thing came out of the day...she can take a regular bath in the tub now!! Yay!!!


  1. Wow! That's awesome that she got the button sooner than you expected!
    Emme tends to do the exact same thing with food. The more solids she eats, the worse she is and it's almost always in the late afternoon or evening when she gets sick. It amazes me how alike they are.

  2. Did they do any other tested besides the emptying scan? We go next Thursday to meet with Dr. Dusick so I hope she can give us more answers! What has been working for you to help the vomiting?

  3. They have done a few swallow studies and they are going to do another in June (to see if she's aspirating.) She's also had an endoscope to check for pyloric muscle problems, celiac, etc.
    What seems to be working for us is to evenly space out her feeds (at least 3 hours apart), not go faster than 120 ml per hour and to limit her solid food intake. We have gone almost a week with no vomiting... fingers crossed this is working!
    Are you still using a pump with Mya?

  4. Yes, we are still using the pump since we have to do her feedings over an hour. I couldn't imagine trying to hold the syringe for an hour! She is not crawling yet, but is trying to move all over the place! The pump is great! We see Dr. Dusick at Riley Thursday so I guess we will see what she has to say! They mentioned possibly doing a G-Tube study? Thanks for all your help!

  5. The pump helped us so much too. In the beginning we were trying to gravity feed for like 50 minutes... what a pain!
    Let me know what the g-tube study is. I'm interested to know.
    Good luck at her appointment!