Two Days!!!

The GJ tube lasted TWO DAYS!! Two whole days ... that's it ... after all James went through!!

Sunday James was back to himself, happy and cheerful, playing nicely, waving and smiling to everyone ... it was so wonderful to see. Sunday evening as I chatted on the phone James decided he was going to do some mechanic repairs on his Little Tikes car .... he lay under the car and banged and clanged and was having a hay day ... then he decided he was done, and his tube happened to be stuck in the door ... out came James, out came the tube. James didn't flinch or realize what had happened, but I just took one looked and started to cry. He's been through a lot and I haven't cried since his first days in ICU ... but I cried this time. When will it ever end??

Why do we always learn lessons the hard way?? One look at the tube told me why it came out and that it would never have lasted ... I would never have agreed to a GJ tube if I had known there was no balloon, disk or bar to hold it in place. It was quite literally a tube and the only thing holding it in place was the tape that you can see on the picture I posted the other day. Nobody told us this ... they told us it was anchoring tape, but we were given the impression it was just for the healing process and that it would come off shortly. The tape had been a bit lose, James had been pulling at it because he was sweating, but I had no idea how important it was that it remain firmly fastened. No matter .... even if I had known I can tell you right now the tube wouldn't have lasted a whole lot longer. James is active and his g-tube often got tugs ... that's the whole point of having a balloon or disk in the inside ...to keep it in place.

Since then I've gone from being upset to frustrated that the radiologist actually thought that something like that was going to stay in the child. And it seems nobody knows anything about these tubes because the doctors and people we've talked to today had no idea that it was simply held in by tape and said they would go speak to the surgeon to see if anything else is available as surgeons often think different the radiologist. Everyone with their bright ideas but nobody making sure it's done right or that it will truly work.

Whatever the case, if they are going to put another GJ tube in it has to have a balloon or disk that will keep it firmly in place and it will have to be done without sedation or anesthestic. We refuse to allow them to put him under again ... pinning him down for ten minutes may be traumatizing, but not near as traumatizing 0r dangerous as all he went through for the sedation and anesthetic. Once again we've learned never to take things for granted, never to assume the doctors know what they're doing and to always asking every question, even when we think it's the simpliest and stupidest question.

So for the time being they've put an ugly g-tube back in James' hole (these tubes get uglier and longer every time) to keep it open and we've gone back to feeding him just during the day. He gets upset that he can never be disconnected, but even having him hooked up just when he is awake means he isn't getting enough formula in a day ... and his weight shows it as it was down again today. We've also come to realize that no nighttime feeds does not seem to help his deSATing issue, although with the sedation and anestetic throwing things off we do not know what's contributing to the worsening of this situation.

Saturday night he had to be moved quite a few times to keep from deSATing ... last night it seemed like I was readjusting him every 15-30 minutes ... needless to say I didn't get any sleep and he was awake often, altho he didn't seem none the worse come morning time ... bright and chipper like normal. Moving him makes his SATs come back up, but not long after they're down again, even if he's still laying in the same position that brought them back up ... so that trick no longer seems to be doing the trick ... and now we're questioning oxygen again. But this could all be sedation related also as we have not had a repeat x-ray done since Friday (we were suppose to today, but they never showed up) and every doctor I see says that the x-ray was awful and it's unbelievable that he doesn't need complete oxygen. But it's also been suggested that when it was taking he was having a spasm and it may not be near as bad as we think. Whatever the case he's having trouble with his SATs at night and his daytime SATs are not anything to write home about either.

And now we sit around with nothing happening again. The Team Meeting is Wednesday morning at 9am and at that time hopefully some decisions will be made. They are not doing anything about the tube right now, except researching what options are available for it ... so it looks like another week will be shot ... by time they have the meeting and then implement any bright ideas they come up with. We've also sent them back to question whether we need to keep James on prednisone ... it hasn't helped thus far and we would really like him off the drug if it isn't doing anything ... another question to be discussed at the meeting. The sad thing is that James actually called the hospital "home" the other day. And the times we took him home he actually wanted to go back ... I wasn't fast enough at getting ready to go. It's sad, but I suppose it's good too ... at least he doesn't hate it here.

I better go rescue James from the volunteer who's playing with him ... he doesn't like to be left for long, even tho they do the exact same things with him as I do.