Absolute Craziness...

Sorry about the lack of updates, it's been crazy. We went in Wednesday morning for surgery and I knew that Dr.P wasn't going to like the look of him. After two days the stoma still wasn't closed and it was very raw. Sure enough he cancelled the surgery. He can't place a new gtube site towards his midline because of a previous surgery scar so the only place he could have gone is to the left around the area of the current site. It is so raw and broken down in that entire area that there's no viable tissue there to put it.

Plus to top it off it's infected now too.



*sigh*



His solution at the time was to replace the tube with a different kind and prescribe some topical cream to try to heal the acid burn and infection causing the breakdown.

My question was what do we do if this one leaks like the button did??

He said to bring him back and they would admit him because we've exhausted our outpatient options.

So we were home by 10am.. and by 8pm we were back being admitted because he was leaking like crazy and was so dehydrated that he couldn't stand anymore.
They tossed around several scenarios from an NJ tube to a GJ tube to even considering ditching it all and going to TPN for a while.

Ultimately they started IV fluids and the following morning he went to surgery for a GJ placement. When he came out they had drains hooked to both the G and the J ports to drain any stomach contents and they are draining like mad. Last night they started J tube feeds very slowly and left the G port to drain, upping the amount by 5cc every two hours. Every 5cc they up the feed, they reduce the IV by 5cc. By this morning he was at 50cc per hour on the J feeds and at 6am he started pouring out a mix of bile and formula. They reduced the feeds to 40cc and started a new med called Eryped. Apparently this med is used for kids with short gut syndrome and it's supposed to improve motility, it's actually a low dose of the antibiotic erythromycin but if it works I'm all for it.

So far he's holding at 40cc per hour on the J feeds although they did have to increase the IV fluids a bit to compensate but that's ok with me, he needs it.

They placed an IV in his hand during surgery (a feat in itself) and another in his ankle for backup so we're covered for access.

As of this evening we're doing the "wait and see" dance..

If he continues to tolerate the J feeds..

If he stops leaking bile and acid around the tube site..

If these meds can get rid of the horrendous infection around the site and help his digestion improve..

If we can find a wound care treatment to finally give him some relief..

Right now he's very thin (down to 21lbs from 251/2) and very weak, but he's beginning to have some smiley moments here and there. This hospital has a great child life team, they're doing a great job trying to keep him entertained in between the procedure induced crankiness.


I'll try to remember to have Daddy bring the camera tomorrow so I can get some pics of the lil man.. he's still cute as ever, even when he's miserable.

Thank goodness for pain meds, they are my new best friend.