04.10.2008 - Surgery Update

From Julian's COTA Journal.

The nurse came in around 6 p.m. and told us that "they're ready for you downstairs." We bundled Julian up and followed the nurse down to the second floor to the pre-op area, where we were checked and re-checked: got to be sure they're performing the correct procedure on the correct patient. Finally, around 7 or so, they gave him a push of Versed to ease his separation anxiety. He began to get loopy almost immediately. We were at peace as we left him in the surgeon's hands.

Around 8:30 Dr. Kennedy (urologist) tracked us down and let us know that the cystoscopy and valve ablation did not go according to plan. There is too much scar tissue along the course of the urethra for a simple (!) valve ablation. Therefore, the vasecostomy remains open. Sigh... So, the next step on that front is to perform an MRI of that region to get a better idea what the specific problem(s) are, and either a) perform a series of operations prior to transplant that could solve the problem(s), or b) move right to the transplant - possibly within the next week or two - and put off the cystoscopy (and other urological procedures) for a few more years. It's possible that there could be a two step process involved:

• Step 1 at age 5-6: re-route the bladder outlet using native tissue (from an existing ureter or the apendix) to form a duct that would exit the abdomen at a catheter. At this time the vasecostomy would be sealed.
• Step 2 at age 10-12: reconstruct the urethra between the bladder and the penis in order to restore normal urinary function.

Not sure which option we're going to go with just yet: the MRI findings will have a lot to do with that decision, as well as the input from Dr. Concepcion, our transplant surgeon. Stacy and I are hoping to go right to transplant, but we don't know as much as the Docs do about the long term effects of either course of action, so we'll be doing a lot of listening.

Okay, back to the surgery... Around 10:15, Dr. Concepcion found us and let us know that the dialysis catheter placement was successful, although they tried on the right side first, only to discover that there was significant scarring where they needed to work. So, Julian's dialysis catheter is on the left side.

We spent about an hour with him in recovery before wheeling him back up to our room on the third floor. Post-op recovery is no fun - Julian is asleep now, but he was in some measure of discomfort as he came back around. He's on oxygen, and they've given him something for his upset stomach, as well as something for his pain.

Overall, we're very pleased with how they've taken care of us here at Stanford. Everyone, from the surgeons down to the nurses on the floor are very reassuring and we're confident we're in good hands. It's after midnight now and I need to get some rest. We'll be meeting with the Docs again tomorrow to discuss our next action steps, including dialysis, which will probably commence in the morning. Julian is looking pretty fragile right now (see photo above) but he's a fighter. Please continue to pray that God continues to sustain Julian - and Stacy and me - through all of this.