Here We Go Again....

Hopefully with not the same outcome.

Our visit to CHOP on Thursday went very well with the exception of our GPS getting us totally lost and late for our appointment. Thankfully I had the phone number for the office handy and called prior to our arrival and they were able to push us back a few minutes. The stupid GPS also got us turned around on the way home. To say the least the car ride was quite stressful.

After waiting almost an hour in the exam room for the Dr., the news was what we kinda expected - that ultimately Daniel will need surgery/a stitch to close up the opening (a.k.a. his fistula) where his g-tube once was. To be honest the news was what we expected but really did not want to hear it. The good news is that it is pretty common for children who have/had a g-tube for an extended period of time to need a stitch and the Dr. we saw stated that, other than having to repair Daniel TE Fistula twice, all the extended issues Daniel has faced are pretty common with kids who have/are diagnosis with TE Fistulas, which was comforting to hear. He did also state that he thought Daniel sounded awesome for a kid who only has one vocal cord and that all and all he looks great - also nice to hear.

Ultimately the surgery will take an hour -start to finish - and it is termed as a "day surgery" so we will be back home that night. And from what it sounds like, the scar Daniel now has on his tummy, will look a lot like his trach scar, which is almost completely gone now. We did go ahead a schedule this procedure at CHOP for the 24th of January. I am going to call Ciny to see if we might be able to schedule this same procedure out there during Daniel's yearly check-up in April but I am not sure if their ped. surgeon would need to see him prior to that. Our long term goal has always been to get all of Daniel's yearly procedures transferred to CHOP since it is eight hours closer, but we haven't asked the folks in Ciny if this will be possible. Maybe this the opening we needed and the man upstairs has opened the door for us and is once again holding Daniel in his hands.

So the saga continues......