CHOP, CHOP

Well as excited as we all were that Daniel's G-Tube site appeared to have closed on its own back in September it appears now that it hasn't and he still has a tiny bit of liquid coming out of it or as we call it here "leaking." (I do have to say that it is pretty funny to hear Daniel scream out "I'm leaking" when the site leaks.) All of Daniel's Drs. have stated that there is a small percentage of G-Tubes sites that do not close on their own and need a procedure to fix it but we were truly hopeful that he would not fall into that small percentage again. Go figure! Though the site does not leak all the time and when it does it is a really tiny amount we thought it would be best to have it looked at and find out what to do.


So back in November we or shall I say I sucked up my pride and made an appointment with the Dr. who fitted or placed Daniel's G-Tube. To be honest, I did not want to go to him as I truly dislike this individual but as I have learned, a child's need comes before anything and Daniel's health is most important. I also have to say I maintained my mouth but I did get my comments in and challenged the individual to the highest degree. Once again he gave us wrong information and stated that "there is a small percentage of children that never experience full closure and it is ok." WHAT?? Not liking this answer and knowing it was wrong I called Cincinnati Children's Hospital and spoke to a wonderful nurse who stated "what that individual told you in completely wrong and we expect full and complete closure here." And why won't one expect that, right? So after a long and helpful conversation she asked when we were scheduled to come back to see them in Ciny and I told her April. We both said "that's too long" and we really needed to get a second opinion locally. Long story short, we are off to Children's Hospital of Philadelphia (CHOP) today for a second opinion.


Though I expect they won't do anything today I do hope that we will get answers as to what needs to be done. From research it appears that Daniel will most likely need a stitch at the site, which is so freaking tiny now I have no clue how they are going to do it, I am hoping that they do not have to make another large incision/scar on Daniel's tummy to close up the stomach wall and the track site where the G-Tube was placed initially. In speaking with the nurse at CHOP she said "Oh he has a gastro fistula" and I was like "there is that word again which I so hate." We are just praying that they tell us that since Daniel's G-tube was in for almost three years that it takes a while for the site to close completely and we just wait it out, or that it is a simple stitch procedure that can done in the office or even better they can put something like new skin on the site and new skin will form. We shall see! Keep your fingers crossed for us!

Luckily Daniel's appointment is scheduled for 9:30 a.m. (stinks for us as we will be leaving here at 6:00 a.m. to get there but I guess it is better than 10 hours in a car) which leaves plenty of time to enjoy Philly, eat some cheesesteaks and know that Christmas is only 9 days away!!