24 Hours

Wow, I'm not even sure where to begin to describe the past 24 hours. It's been so crazy to say the least. I'd have to say that the parts of the day I thought were going to be the worst, weren't actually that bad and the parts that I thought were going to be easy and jubilant, were actually r toughest. Really I guess I should say I thought saying goodbye to Stephen and leaving him in the OR was going to devastating; like uncontrollable sobbing/ugly cry. But, they had given him a dose of versed in the PACU which made him so giggly and happy that he was too cute to be sad. And then I think I was running on adrenaline and kept so distracted by our contingent of "Stephen Warriors" during most of the 7 hours in the waiting room, that I wasn't at all panicked. Plus, we had a nurse updating us every hour, which was amazing!

But on the flip side, I thought hearing from that surgeon that e surgery went well was going to be a big celebration, but in reality, it didn't actually go that way. Yes, he did say the surgery went well, but there were some issues and when Stephen came out of the OR, the kidney was actually only sort of working; not totally functioning. And it hit me like a ton of bricks that this might not go as well as we had all hoped and our new lives post-transplant might not be all "rainbows and butterflies." Basically, managing expectations is damn hard. But by the time we got up to the ICU, the kidney was putting out glorious pee! And all was right with the world again.

As I mentioned there were a few issues encountered during surgery. The first of which was all the scar tissue that had built up in Stephen's abdomen from his previous surgeries and bouts with peritonitis. The surgeon had to spend a lot of time working through it so he could make room for the kidney. The second issues was actually finding room for Kristin's kidney. Apparently, between the size of her kidney, Stephen's little belly, the scar tissue, and his bowel being totally full, there wasn't a lot of room. Third was Stephen's teeny tiny bladder and being able to hook up the plumbing to a teeny tiny bladder.

Once the surgeon got the kidney in and hooked the aorta up and the rest of the plumbing it started working and making urine right away. So they removed the peritoneal dialysis catheter and sewed him all up. But once he had been sewed up, the kidney stopped working. They weren't able to fix the issue with medications, so they had to open him back up and double check everything. It turned out that there was a kink in his bladder's plumbing and they needed to put a stint in to get things moving. Once they did that, the kidney produced a small amount of urine, and things were working again so they stapled him up.

I guess hearing all of this coupled with a small bowel injury, put me on edge a bit. But the surgeon did say the surgery went well and that Stephen did really well throughout the surgery. In total, from the time anesthesiology took him until the surgeon came out to talk to us, was a little over 7 hours.

He was moved up to the pediatric intensive care unit (PICU) where he'll be for about the next week. He's done really well and seems to be handling the decrease of the ventilator settings well, so the doctors are talking about either taking him of the ventilator tonight or early tomorrow morning. He'll still need some oxygen support, but at least he'll be able to communicate with us other than nodding his head (he can say no, but not yes). Unfortunately though, they'll be keeping the central lines in his neck and wrist and an IV. Which I'm sure he'll just love! The one thing that he will have for weeks to come is his folley catheter draining his bladder. His bladder is just too tiny for it to hold anything and they don't want to risk ripping the stitches by putting any pressure on it. So we will likely go home with a catheter and bag.

But I think he looks fantastic and all his numbers are fantastic, so as long as we can keep this trend going, we'll be back in business in no time!

Liquid Gold

Sorry I'd really love to tell you absolutely everything right now, but I'm drained. But want you all to know Stephen is doing well. The kidney is amazing and is making good pee. He's still on the ventilator and will be for a day or two until they work out the blood pressure issue and get all the fluid off that he needed for the surgery.

We definitely have some long, tough days ahead, but this has been one incredible day and we owe it all to Stephen's guardian angel and hero, Kristin.

I hope I'm not scaring anyone by posting a picture of Stephen, but I'm sure there are a lot of folks that want to see him (I hope). And I promise to share more once I eat and sleep :)

Surgery is Done!

Heading to the ICU to see Stephen right now!

Update #3

Kidney is in!!! We don't yet know if its working because they haven't connected all the "tubes," but it sounds like everything is going good. They do still need to pull out the PD catheter and of course patch him up, so it will be another 2-3 hours.

But good news so far!

Update #2

Stephen is stable and doing well and they are working on making room for Kristin'a kidney. He has a lot of scar tissue built up in his belly from previous surgeries and from bouts of peritonitis so they are slowly, but surely, working through that without causing too much bleeding.

But the kidney is here and waiting patiently in a bowl of ice water to get to work for Mr. Superman!

Update #1

The transplant procedure itself started at 12:49 pm. Everything up until this point has gone well; putting in all the lines and the feeding tube. We should receive an update on Stephen's progress every hour on the hour.

We also just heard about Kristin. She is out of surgery and in recovery. Matt hasn't been able to see her yet, but it sounds like everything went really great. She is our hero!!!!!

Surgery began

Stephen was taken back at 10:50 am by anesthesiology. They had given him a dose of versed which made him a very happy and smiley little boy. Now we just wait the long couple of hours....