Surgery was more difficult than expected, but Emerson did okay.  Imagine her bladder as a balloon – it’s been distended for so long (because it doesn’t contract & empty properly) that it’s all stretched out.  It’s “huge”.  Apparently the site of the suprapubic catheter (where they’d been doing all the dilations) had flopped over on top of a bone ??? – the pelvic bone I’m assuming.  As such Dr. M was unable to use it.  He stitched it closed.  Yep… the 3 month process of dilating her catheter site for the purpose of creating a stoma?  All for nothing – he stitched it closed!  Bummer… 

He was able to avoid the transplant scar, but did make a new 5-6 inch incision just below it to get into the bladder & pull it to the surface.  He said there was quite a bit of fat & muscle to pull the mucosa through, but her bladder was just large enough to accommodate it.  He said the surgery would have been difficult, if not impossible, to perform this way on most people.  In a traditional vesicostomy a piece of the appendix or small bowel is used to bridge the gap between the bladder & the skin’s surface.  Eme has no appendix & her small bowel is fragile – the surgery would not have been possible if it required either of those organs.  So, in a nutshell, that which made this operation necessary actually facilitated it as well.

Dr. M wasn’t able to get in with a scope, as hoped, to eyeball the inside of Eme’s bladder.  He was able to see part of it, though, through the incision & didn’t see any obvious ulcers.  He said the entire lining of the organ is red & inflamed though – likely due to repeated infection.

Emerson came out of surgery in a tremendous amount of pain.  Her blood pressure & heart rate were very high post op & she required max doses of both morphine & fentanyl.  She’s also on oxygen (2 liters).  Dr. M placed a traditional foley catheter through her urethra for urine drainage while the site heals.  He said it will stay in place 4-5 days before we attempt to use the new stoma.  The wound has been left open & will be packed to encourage healing & to prevent infection.

Emerson was transferred to the PICU.  She just started moaning again & more pain medication has been pushed.  Poor baby, how I hope this will finally allow her some quality of life.  The next step, if this doesn’t work, is to remove her bladder completely.  Please, please let the infections cease & the suffering stop…