Goodbye GJ Extension!

Explanation:  This is a picture of Jayson's GJ tube.  It is a Corpak GJ peg tube, which is really a G-tube peg with an extension the doctors can add to make it a GJ tube.  It has two ports.  One port is the G that goes directly into the stomach, and the other is the GJ that goes into his intestines.  This is NOT typically the tube they place in babies for this procedure.  It is a size 20 fr and is made for larger adults.  To keep the extension in, yes, it was TAPED together by doctors.  Without the tape, the tube comes out of his intestines.  This GJ extension tube came out in November and we miraculously got it back in after an afternoon in the OR and 3 days in the hospital.

The procedure to remove the entire peg tube and move to a button is more complicated than most (see this blog post for details) so we have had to leave this in over 5 months, when a peg tube is commonly only in for 8 weeks.  We switched GI docs and found one who is familiar with this tube and comfortable removing it.  We set a procedure date of April 9th, in which Jayson will go under anesthesia for this change.  There is a higher possibility for complications with this tube, but we hope and pray it will go smoothly.  Our new GI doc and I believed it would be great (and ambitious) for us to switch to a G-tube button, instead of a  GJ.  Jayson is no longer aspirating his reflux, so we should be safe to feed food into his stomach.  It takes time to wean a child from intestinal feeds to stomach feeds.  I have SLOWLY been working on this weaning process over the past 2-3 weeks. 

Yesterday, Jayson's tape became worn and stopped holding it so the tube slid out as he played.  It came out at least a foot.  When his tube came out, we had to make a decision.  I knew they wouldn't even attempt to string this tube back down like they did in November.  He would have to undergo anesthesia, there would be a high chance it wouldn't be successful, and it's going to be switched out in a few days anyway.  Our doctor/surgeon is out of town on vacation.  Normally we might just have contacted him and had the surgery done today instead of on the 9th.  I was fearful that the decision at the hospital last night would have been to have someone else do the tube switch, as it typically is a simple process.  Instead, I was hoping that perhaps I could just pull the J extension out the rest of the way and feed Jayse through his G port for the next 12 days.  To do this, I knew we needed to get a chest x-ray to prove he hasn't been aspirating his reflux or anything orally.  I also knew that it would be risky because Jayson has NEVER had exclusive G feeds, and he has had difficulty tolerating the smaller G feeds I have done over the past couple of weeks.  He has been getting stomach cramps and tummy aches, and has had a lot of gas.  His poor tummy needs time to stretch.

Well, we decided to do the chest x-ray.  Results came back fast and it looked good!!!  While at the hospital, I pulled out his J tube and we hooked him up for feeds in his G port.  He did well last night with his first full night of G feeds.  He had some tummy cramping and discomfort, but seems to be happy today.  I am hoping and praying that this continues over the next few days until the date of our procedure.  Perhaps this was all for a purpose--- to get J's tummy read for a G-tube button.  Life will be simpler with a G button, instead of a GJ tube, and it will be safer for him with lower risks too.  Thanks for all of your thoughts, prayers and support.  April 9th can't come soon enough so we can finally put all of this tube drama behind us.

The long extension is now gone, and we now hook up his feeding bag directly into the G-port which goes right into his tummy. :)  (The white tube with the red connector is part of his feeding bag.  It passes the milk into his tube)