Not Done Yet

We were all hoping that after Daxton got his brain shunt he would be more alert and eat better.  We were trying to avoid a g-tube.  Early on in the second hospital admission, Daxton had an upper GI scan as well as a barium swallow test.  These tests showed perfectly normal anatomy and no signs of reflux.  That was significant because it meant we could avoid a fundoplication procedure if a g-tube was needed.  The fundo is basically a tummy wrap that is supposed to make vomiting impossible, although I know a few kids with a fundo who still puke. Ugh!

Anyway, we knew there was nothing anatomically wrong, but Daxton still wasn't eating like he should.  There was really no way to know the cause - was he still in recovery mode (I know I would be), was he just a lazy eater, or was there some neurological deficit from the brain damage.  We wanted to give him every benefit of the doubt, but after hanging out at the hospital for another week, we had to face the fact that Daxton needed some assistance in getting the amount of calories necessary for adequate growth.  We were having to use the NG tube to finish his feedings and it really isn't practical to go home with an NG tube, especially because Daxton was really fond of trying to pull his out.

So, another surgery was scheduled.  The neurosurgeon wanted us to wait at least a week from the brain shunt surgery to lessen the chance of infection - scary!  The g-tube surgery was also about 1 1/2 hours. (It took a little longer than usual because the surgeon also removed Daxton's umbilical cord that he apparently was very attached to and circumcised him at the same time.  I know.  Poor kid.  But hopefully he won't remember any of this!)  A g-tube is a port directly into the stomach.  At first there is a kind of long tube coming out of his stomach that ends with the port in which to put feeds and meds (convenient for the nasty-tasting seizure med).  After a few weeks the tube is replaced with a Mic-key button that is a little more flush with the skin and not so cumbersome (hopefully).

We were getting a little nervous before surgery because RSV had just hit the pediatric wing of the hospital, and it hit hard.  We really wanted to get Daxton out of there before he got sick.  RSV is never a good thing, but we sure didn't want one more thing on Daxton's medical resume!!  They moved us down the hall, away from the "dirty" rooms (actually we were in five different rooms that stay!), and he was spared infection.  More tender mercies!  Daxton had the surgery, I learned how to work a g-tube, and once again we were released - all in time to be home for Christmas!!

Finally going home!  So skinny! :(

G-tube!