Saturday, February 7, 2009

Eye Appointment and PEG Replacement

Ok, so I have to vent about our 17 hour day yesterday. We left the house at 4:00 am...the trip there was perfectly fine...Matthew slept the entire way...we got there at 7:15 or so (we made good time) and beat the morning traffic, which was our goal...because if anyone one knows...after you reach Dayton, traffic can get pretty hectic. Anyway, we go to Matthew's eye appointment (just a recheck, cuz last time they told us he wasn't favoring his left eye anymore and that his glasses were doing great). Anyway, they do these picture tests and the nurse tells us that Matthew is still favoring his left eye over his right...the nurse says we'll probably have to patch the good eye a couple of hours every day....(ok, not fun but not too bad). Well doc comes in a redoes the test and says NO, probably 4 to 6 hours a day...(oh just great)....just one more thing we have to get him to do for ALMOST THE WHOLE FRICKIN DAY!Ok, so that appointment is over and we are a bit bumbed out. We go to his next appointment, which they say should only last 5 minutes. 5 minutes to pull out the PEG and then replace it with the mic-key button. We give Matthew Tylenol an hour before for the minimal pain he should endure. So in comes the doc, she goes over it with us and we begin to hold our son down for her to quickly pull this thing out....she pulls, he screams! She pulls some more, and more and more and more and more and more...time is passing by very slowly and Rob and I are looking at each other like COME ON LADY, PULL IT OUT! He's screaming bloody murder and she says "It won't come out!" I said "WHAT DO YOU MEAN IT WON'T COME OUT, IS THAT NORMAL TO HAPPEN SOMETIMES?" "No" is her response. Ok, at this point I start to see stars and have to sit down. He's still screaming, Rob is getting pissed and I'm losing consciousness.Finally, she stops. She says, "looks like we're going to have to go in and get it?" "WHAT?" Yea, surgery! She says, "well you could come back another day..." Another day, Uh, NO! We drove three hours to have this done here and we are not leaving until it's done. She asks...did Matthew eat anything today? Dread came over me. He had had Pediasure at 7:30 in the morning. That meant surgery could not take place until 4:00 in the afternoon. Oh, I cried...and cried!To make a long story short...we waited until 3:15 pm for Matthew to be sedated and have another endoscopic procedure to get his PEG Tube out and replace with the mic-key button. My poor baby has endured so much and remains to be an amazing, resiliant kid. He played and smiled and waved to everyone as we waited those long hours. Neither one of us had anything to eat except a candy bar out of the room so as to not remind Matthew that he had not had anything to eat all day! Surgery took 10 minutes...! They told us it was half way out, but scar tissue had formed and it was lodged in the middle. They said it would have hurt him to pull it out the rest of the way...YOU THINK?Anyway, we left around 5 and got home about 9:00pm. A very long, heart-wrenching day for all of us.God forgive me for complaining, because in a hopsital you see so many horrific things that are far worse than your own, but when its your family and your in the moment, nothing seems as bad.I'm truly sorry if this scares anyone, it was not my intention to freak anyone out. All I can say is that if you're having your PEG-tube replaced, have it done early in the am and don't let your little one eat in case it won't come out and they have to go in and remove it. Otherwise, you have to wait 6 to 8 hours before they'll put them under.Thanks for reading...