That Doesnt Go There!

"That doesn't go there!"

...not exactly the words you want going through the surgeon's head as he operates on your daughter.

Alexi started off her hospital tour here at CHP (Children's Hospital of Pittsburgh) with the upper GI scan on Friday the 12th that showed a definite obstruction in her duodenum.  The duodenum is the first bit of "plumbing" after the stomach.  They could have checked her in that day, but let her go home over the weekend and attend the Three Rivers Dash for Down Syndrome! 

Monday morning Alexi got some breakfast and a bottle, then off to the hospital we went.  She needed to have a barium enema in the morning and we checked in for our extended visit soon after.  She was on a diet of clear liquids only on Monday and Tuesday morning was banned from anything by mouth.  In went the IV to keep her hydrated and the NG tube to suck everything out of her tummy.

She hated the tubes but eventually learned not to tug at them, allowing her to remain unrestrained.  With no food she was pretty tired anyway so she just wanted held non-stop.  No complaints here, holding my daughter has got to be one of my favorite things to do these days.  Same rules applied for Wednesday before surgery.

Alexi was called down to the OR and we didn't wait long before she was taken in by the anesthesiology team.  I don't think I'll ever forget those eyes looking over her shoulder as mom gave her a hug and kiss.  Then as soon as the nurse picked her up, Alexi was happy playing with her mask and never looked back as they walked away.  I had gone over that moment in my head a hundred times and thought I was prepared.  Man there is no way to prepare for that feeling!


So we had been prepped, this surgery was going to take around 2-3 hours.  We knew that was just an estimate and were prepared for a longer wait.  So after about 2 and a half hours the liaison nurse came in to give us our update, and said the were no longer to continue laparoscopically and would have to proceed with an open surgery.  We had known this was an option if the duodenal web was too difficult.  What she said next is what alarmed us.  (Kerith and I are sort of pro active, and did a bit of research on Alexi's condition prior to surgery. ) The liaison nurse informed us that the game plan had changed due to the surgeon finding that Alexi had Malrotation and some twisting.

That first part is hard enough to hear, it means that when Alexi was developing, her organs never rotated the way the rest of ours did, causing them to be nowhere near where they are supposed to.  In laymen's terms, navigating through Alexi's intestines was like trying to use the new maps for the iPhone 5!  (ok bad joke but I'm tryin to keep it a bit light around here)  This alone can cause lots of problems and made the surgery much more of a procedure than initially planned. 

The second part of the nurse's statement is what floored us.  The word twist is much more serious.  The configuration of Alexi's intestines made them much more vulnerable to twisting around each other.  Wrapping around each other can cause constriction, which can cut the blood supply to organs and cause organ death (gangrene.)  The gravity of the situation went from bad to worse...way worse.

The next hour passed with no update, then another 30 min.  I honestly can not believe it was only an hour and a half, at one point I remembering asking how long it had been since the last update, and my mom informed me about 15 min.  I literally thought over an hour had passed at that point. 

Finally we were updated again that they were almost done repairing her and we going to start closing up soon.  We asked if there were any complications with the twisting and the nurse said he didn't think so because they would have mentioned it.

A bit of relief.

I don't know how much longer it was, but ultimately the surgeon came in and went over the procedure with us.  It turns out there was no twisting at all.  The malrotation required a more in depth procedure, but was completely repaired.  They are unable to put the organs where they are "supposed" to go, but reconfigure them in a much safer way, reducing the risk of twisting drastically.  As a result of reconfiguring her organs, her appendix would have been in the opposite side of the body and up much higher than it would normally be found, so it was removed to prevent misdiagnosis if Alexi ever had an issue with it.  BUT, no twist means no permanent damage to her other organs!

Wow, an organ (however useless) was removed from my daughter and that was the most minor part of her surgery.  They did still find and remove a duodenal web, without needing to perform a bypass.  So that part went very well.  Finally we can breath a bit easier.  Alexi is going to be ok.

Update:  Since surgery Alexi has been in quite a bit of pain but is taking it very well, considering she doesn't know why this is all happening to her.  She now has the NG tube, 2 IVs (one currently active), a pulse ox, some monitor leads, a catheter, and an epidural.  She is seriously not happy with all of these tubes and wires but is doing surprisingly well not removing them.  So far she only needed the NG tube replaced once and the catheter replaced once.   She's behaving mostly because she is asleep 90% of the time and delirious the other 10%.  We'll see how the next few days go, but no matter what, she is recovering.  That is so good to know, she's done, it's time to heal.