Tummy Time and a bunch more

Hey All!  These last few weeks have been pretty busy.  First of all, the day after my last post, on July 4th, Dylan's G-Tube came out AGAIN!  Ugh!!!   Luckily we caught it before it started closing this time and we were able to insert the "red robin"  to keep the stoma from closing, and then rushed him back up to the ER.  I'm actually quite pissed that he's only had the G-Tube a little over 6 weeks and it's already come out twice!  I know that it would happen.. everybody told us, " It IS going to come out at some point" .......... but twice in less than two months?? AND both time's it was because there was a pinhole leak in the balloon of the G-Tube ..... We made and appointment with Dylan's G-Tube surgeon to check things out, and he says that the site looks good and he doesn't think it has anything to do with the insertion site ( we thought maybe there was a small suture or wire or something inside that could be popping the balloon).  He said that sometimes they just get "bad batches" of the tubes.  They taught us .... well we watched them take Dylan's out and check the balloon and then put it back in .... so now we can put his tube back in ourselves if it comes out again instead of taking him to the ER.......  That's Joe's job ;-)   I'll do it if I have to, if Joe isn't here....... but if he's here......... He's doin it!



We also had an appointment with a nutritionist to try and get somebody to start working with us to adjust his feeds down to bolus feeds, since his pediatrician want's nothing to do with it.  It's going to be a slow process, but at least its on its way.  I can't wait for him to be without the tube!!!  I know that he needs the G-tube right now to get all of this nutrition and gain the weight that he needs.......... but I HATE it.  I hate that it comes out all the time, I hate having to watch how I pick him up, and make sure I'm not pulling on his cord.  I hate having to carry the pump with us,  I just hate it. :-(     Starting on the 21st of this month, we will be working with OT once a week on getting him to feed by mouth....  he doesn't want anything to do with it right now....... the minute anything is in his mouth that he has to swallow....... he freaks out and throws a fit.

We have a cardiology appointment tomorrow for a chest xray and for Dr. El Said to see him to make sure that he's ok ( he's been having some diarrhea and REALLY loose stools ) for his Cath on Friday.  We'll check into the hospital Friday morning and he will have his Cath Friday afternoon.  We will have to stay the night Friday night and if everything goes well, we will be able to come home on Saturday.  I am extremely nervous for his Cath.  I know that it's needed, and that its a generally low risk procedure......... but we all know that anything can happen, and seeing him intubated again is going to be really hard :-(

Other than that we've just been enjoying having him at home with us <3   We really haven't been putting him on tummy time as much as we should be because of his tube falling out and him just not liking it .... but .... he really needs it.... so for the last few day's we've been really good about making him do it.....  He's doing so good!!  We are extremely proud of him and how far he has come after everything that he has been through.  Keep fighting little Warrior.... everybody's behind you!

Relaxing with his Wubbanub after doing such a good job during tummy time! <3