Recap of Riley's day

Wow. Did his day really begin at 4:30am this morning? I know I got up at 3:30am to get ready, and we pretty much scooped him out of the bed and plopped him in his car seat and off we went.

We got to Duke RIGHT at our arrival time of 7am. Brigit met us when we got off the elevators and ushered us right over to the check in desk. I signed some papers, and then off to the back we went. They took Riley's vitals and put him in a little baby sized hospital gown and put his ID bracelet on. His surgery was scheduled for 8:45am, so we just had to wait for that time to get closer and anesthesia to come around. They finally do about 8:25am and about 1/2 way through their visit, he gets a phone call, and we find out that they are pushing Riley's surgery back because of a sick baby that needs surgery somewhat emergently. Disappointing, but hey, OUR kid pushed someone else's kid back for the very same reason before, so we dealt with it.

The surgeon came by to see us beforehand, and he dropped a bomb he had been keeping secret, that if he had to make a lot of connections in Riley's large intestine, then Riley would KEEP his ostomy for the time being, while those connections healed, since the connections are an issue AND the fact that nothing has passed through his large intestines in 11 months. This was disappointing news, as we knew the surgeon needed to make at least 3 connections based on the last GI study we saw.

They finally came back about 10am and by 10:20 Riley and I were walking to the OR together, me carrying him. (that was me in that white jumpsuit)



We walked just a short ways to the OR, where I laid him down on the operating table. It was a little thing, just his size. He laid there half sucking his paci and half making "oooh" noises, as if he was curious about what was going on. They put a few sensors on him, and then put the gas mask over him and within about 2 minutes, he was fast asleep. It was easy and peaceful. I whispered in his ear while he was drifting off to be strong and remember to fight and that I loved him. The nurse walked me back out to the waiting room.

About an hour later, when we were really beginning to wonder when they were ever going to call out and say surgery had begun...the lady at the desk answered the phone and called me over. The surgeon wanted to speak to me. Talk about a heart hitting the floor moment! Turns out, they had been trying all that time to get an IV started on Riley (thankfully he was asleep), and had ZERO luck (I have counted up about 8 different places they tried so far). Surgery cannot happen without an IV to deliver meds with, and they can't get an IV in him, so he wants permission to put in a central line (remember his Broviac?). So they put in a central line, that is similar to his Broviac, and that took about another hour. Finally, about 12:30, they call to say they are done with the central line and are FINALLY starting the real surgery (this made 2 in one day!).

We were told in pre-op to expect the surgery to last about 5 hours. So we went for food in the cafeteria, with the greatest friends EVER, Jay and Christie, who came up to sit with us, and Rachael, who had come by to visit as well. We ate and sat for a bit in the cafeteria, and then we took Jay and Christie to the 5th floor to show them where Riley used to be, and where he would go after this surgery. We took them to the 9th floor, and Riley's helicopter was up there, and we looked out at the Duke Chapel. We thought about walking over there, but the OR nurse called and said all was going well, and about 45 more minutes. What?! It was supposed to take 5 hours, and this was about 2:00 when they called, so it was only an hour and a half into it at this point.

We go back over to the waiting room to sit and wait, and just about exactly 45 minutes later, the surgeon comes out. He looks very pleased, and he tells us that the surgery went so well. He examined all of the small intestines, and none were damaged in the process of doing so, so no repairs needed there. Shock #1. They found NO evidence of the leak he had back in December. That is unheard of. Shock #2. He examined all of the large intestines, and they looked fine, so he didn't remove any of those either. BIG shock #3. So he hooked the end of the small intestine that once came to the surface of his belly up to the free end of his remaining large intestine, and sewed him back up! Amazing. The absolute best possible outcome. Unbelievable.

Riley ended up not needing to go to the PICU, but instead went to the post anesthesia care area, and then was moved to a transitional unit that is in between the level of care in the PICU and the regular pediatric unit. He will be here through tonight for sure, and once he no longer needs the closer nursing care, will be moved to a regular room. This is like a regular room, so I am staying with him, but the nurses in this area have fewer patients, so he is more closely monitored, but he didn't need the 1 to 1 care of the PICU.

We'll have to give it a couple days, and then they will allow him to eat, barring any complications. He will keep his new central line until he's ready to go home. They can draw blood, deliver medications, and not have to stick him for as long as he has it. He has a catheter right now, that hopefully will come out tomorrow. His incision (along his old incision) is covered in steri-strips only, not the big gauze pads we are used to, and from what we can see, his belly looks really really good. The goal for tonight, is to keep him comfortable, and try and get his too-high heartrate to come down. The theory on the high heartrate is fluid loss during surgery (although he needed NO blood products for once thank goodness!!), and the fact he couldn't eat, etc etc. So they are pumping lots of fluid into him. And he is running a slight fever, which can be common after surgery due to the amount of stress on the body. He is stable, and doing great though! We never even saw him with the ventilator tube. The surgery chief resident came by to check on him a bit ago, and was telling me how fantastic the surgery went, and how amazing it was the outcome, etc, and was telling me how intestines tend to shut down when fiddled with, but that Riley's were WRIGGLING IN HIS HAND at the end of surgery, so his bowel function may return fairly quickly, which is a precursor to his being allowed to eat.

Today has truly been an amazing day. A few bumps in the road, but what an amazing end result. It leaves me in awe to know that I am the mom to a living, breathing miracle.

Thank you SO so much for all of your prayers and kind thoughts today. Please continue to keep him in your prayers, as he still has quite a bit of healing to do. Hopefully, he will make rapid improvement, and the pain will continue to stay controlled. Thanks so much to Jay and Christie for all you did to spend today with us. Thank you Rachael and Brigit for taking time to see us as well. You all have no idea how much it means to us!

Riley is SUCH a Rock Star!