Emily’s blog from last night left us in the waiting room. Around 11PM I looked up at the status board in the waiting room and all the other procedures had finished, just Patrick on the board in OR 3. About 11:45 we got a call saying that they were done and the surgeon would meet us in the PICU lounge. So we packed our stuff and headed back to the PICU.
We got to the PICU lounge and watched a kid try to climb the walls. We were pretty sure he had family on the floor, and he wasn’t allowed to be in the room, so he was stuck in the waiting room. I then realized that he probably didn’t get to participate in any of the Halloween fun that had been happening outside the hospital that night. I couldn’t get to unhappy with him for trying to entertain himself.
Dr. Grant came and sat down with us. She said everything went well. He was able to keep his G-Tube, and his belly button. G-Tubes are often removed because they remove parts of the stomach to try to make food pass better. And belly buttons are often in the way of the incision, however usually if you tell the surgeon that the belly button is original and it wasn’t created by some other surgeon, they do their best to keep it around. She mentioned that she removed his spleen and gallbladder partially to make room for the new organs, and partially because they have potential to cause problems down the road.
Dr. Grant was able to completely close his incision. She mentioned that the likelihood that they will have to go back in and clean things out is about 50% so she only stapled him closed.
We both looked at each other and knew that we were all dead tired, so we agreed that we would chat more in the morning.
We then watched them wheel Patrick by with multiple people from the team surrounding him. They had told us that we needed to wait before we could come back, but no one really told us how long. There is a lot to get done when any patient comes out of surgery, not to mention one like this, so they prefer not to have parents around getting in the way and asking questions for a bit, which to us is completely understandable. Some told us to wait an hour, some said that they would call us when they were ready (that never happens). So we sat there, half awake. Finally I decided that I would go ask the receptionist to call back and see if we could go back and kiss him goodnight and head back to our room to get some sleep. They agreed. When we got back to his room we were greeted by the main PICU doc with many questions. Guess we didn’t need to wait that long.
We answered the docs questions, and said hi to the team that would be taking care of him that night. They mentioned that they would be trying to extubate him in a few hours which caught us off guard. We asked that they call us if they did, they agreed. We wandered back to our room which is about a 5 minute walk back.
We both got ready for bed quickly, and were asleep as fast as we could.
We slept pretty well. We got notification of a voicemail on our home phone, so we listened to it, and it was the nurse asking us to call because she had a few questions. So we got ready for the day and headed up to his room.
Patrick was still pretty out of it. He would open his eyes just a little bit look around, and fall asleep. Which is what he did most of the day.
In the early evening we were doing what we could to try to get him to fully wake up and open his eyes. I had walked to a grocery store and among the things I picked up was chap stick. Understand that Patrick obsesses over chapstick, when he has some it is like his little friend, he has to have it everywhere. We offered him a stick of chapstick, and he immediately wanted it, wouldn’t open his eyes but wanted to hold it. His hands weren’t really coordinated enough to hold the chapstick though. He fiddled with the chapstick for a bit, and we asked him if he wanted to put some on Emily’s lips. He nodded, so Emily put the chapstick in his hand and bent down so he could reach her lips. The nurse was out of the room when this happened. As the nurse came back in the room, I heard another nurse comment to her “He is putting chapstick on his mom, I think he is awake enough to come off the vent”. So the nurse went and got the doc, who gave the go ahead.
They turned off the vent and took the breathing tube out (extubated) him. He started to try to talk, and had a croaky little voice, but at least we could attempt to communicate with him.
They put him on oxygen using a nasal cannula. He doesn’t like things in his nose, so he made every attempt to pull out the cannula.
Because he was off the vent, we could ask to hold him. The nurse happily agreed, and we started getting things ready so Emily could hold him. This was a bit of a process, with IV lines, monitors and other tubes attached it takes a bit to move him. But we did fairly easily. He is much bigger since the last time Emily held him in the PICU. But they were both happy to be in the situation.
The rest of the evening was spent with Emily hold Patrick trying to keep his hands away from the oxygen cannula. I did what I could to keep them both comfortable. Patrick got a little more voice back, but it is still not what it should be, but that will come with time. He is still quite out of it. He hasn’t had any pain meds or sedation since this morning, but he is not really complaining about pain. He is a great little trooper.
As I finish this blog Emily is already asleep. It is amazing how tired we are.
Thanks again for all the thoughts and prayers. Tomorrow is the sabbath for most please join us in thanking our kind Heavenly Father for this amazing blessing, and asking a blessing of comfort on the family wherever, whoever they are for making the choice to help so many other families at such a hard time.