OR Report

After a late night last night, some middle of the night bed changes, and 6am baths, Julia decided to sleep in this morning until 11am.  She was completely knocked out.  Her nurses were very sweet and let her sleep.  So appreciated! It is a huge no-no to wake an NPO kid, especially on the day of surgery. Thanks to everyone for their cooperation. (Didn't even need a sign Ashton :) but if sleeping for the entire day means she's up all night, I hope the same nurses are back to play in the wee hours!)

She had a little time before surgery so we headed to the playroom to paint some window art.

She was excited to have company.  Mimi, Carter, Daddy, Pastor Ken, Debby, Ginny, and Giselle came to play.  She's not much of a playmate these days, but likes to watch the action.

They took her down to surgery around 12:30...

She completely understands what is happening.  She actually still remembers laying on the operating table during her past surgeries and can describe who was in the room and what everything looked like.  We could tell she was going to put up a fight when they went to take her back.  Her NG tube and IV experiences this week have made her a little more 'gun-shy' and a little more spunky.  She was also begging for food.

The anesthesiologists were great.  They did a full history.  We talked about all her past sedation experiences and they went back to the computer to research her past 9 sedations.  They decided we would do a ketamine pre-med so she would be out on the stretcher when they took her back. Note to self: don't tell her it's just saline because it burns going in.

It worked instantly. As they wheeled her back to the OR, anesthesia said, "Add that one to your arsenal of good drugs." So the list grows.  We know for a fact that propofol, clonidine, ketamine, morphine, and zofran are our friends.

She was in the OR for about an hour and a half.  Dr. Fortunato came out to talk to us.  He said they were able to explore the entire length he wanted.  Her colon tissue appears healthy and pink.  They did not have to do any biopsies.  The problem lies in the fact that her colon is enormously distended.  It is huge, even to a GI doc.  He said it is so large, the scope coiled into a circle because of all the space.  Thus the problem. 

After they pulled the scopes out and drained the saline fluid, her abdomen was completely sunken except for a huge round bulge at the bottom... her bladder.  They immediately cathed her to drain it and drew over 500 cc's of urine.  It appears her bladder has not been functioning at all this week, while her colon was full of Golytely solution.

Dr. Fortunato said this solidifies Dr. Hodges (urology) case of why he was adamant something happen and happen soon.  The shear size of her colon is compressing her bladder and causing it to basically, for lack of a better word, spasm and panic.  The walls are thickening, it's over-reactive, and she cannot control her urine flow.  He told us at the last visit that once her bowel situation is remedied/controlled (hopefully in a year) she will begin long term biofeedback, physical therapy, and bladder retraining. We see him again in early February.

They took her right back to her room from the OR and she was awake and somewhat responsive as we walked back. Dr. Fortunato was also thoughtful enough to remove the NG tube while she was sedated.  A million thank yous.  It is the little things.

She is sound asleep now and hooked up to all her colonic monitoring equipment.  She will be in the bed now for 24 hours while this computer and leads monitor her colon activity.  The good news is she gets to eat and drink.  In fact she has to in order for this all to work.  So we are praying she wakes up with an appetite.

These 8 leads are wound into one catheter running into her body.  They are attached at 8 different points along her colon to monitor the muscle movement.

The goal is to get a "stairstep" reading on these 8 lines from the top down which would show a progressive, synchronized movement by her colon.  As you can see we are pretty much flat line at this point.

They are also concerned about her bladder being so full and not emptying.  It should not have been holding over half a liter of urine.  The peds doc just came in to discuss the issue.  We talked about all her past urinary issues and they are going to closely monitor and decide what kind of bladder monitoring she needs done.