Wednesday, September 10, 2014

Peter's big day

Peter and I headed out early the morning of the 18th to get him checked in at the hospital. He had a liver scan scheduled for 8:30. Traffic was really good so we got in early, which meant they were able to check in early. We waited a few minutes and then did the scan.
 This wonderful contraption was in the Radiology waiting room. We spent a long time watching and listening to it. Then we had the scan. Turns out everything was normal from that scan, which is a great thing. With the liver functioning normally we get to rule out lots of scary things.

 Then we waited in the pre-op waiting room. That one took a while. Some surgeries took longer than expected, so while we got there an hour before our scheduled OR time, they didn't call us back until an hour after he was supposed to be finished. So I had a crazy, hyper, HUNGRY child that would not sit still. I was grateful for the moments that he allowed me to push him around in a seat...
 Those moments never lasted very long. Most of the time I was trying to steer the cart away from people and walls and signs as he pushed it along. Another time I barely caught him before he boarded an elevator headed downstairs.

Finally we were called back to pre-op. They took all of his vitals and we waited a while longer.
 We met all of the OR nurses, our dr and his assistant, the anesthetist and his assistant. I answered a million questions, warned the anesthetist that he was a hard stick, please leave his two fingers for sucking. They decided to wait until he was under before giving him an IV.
 Then they gave him a sedative and he really started to calm down.

Finally they wheeled him off with very little fanfare. I went into the OR waiting room and was applauded by the staff and a few parents. One mother remarked that I must rarely sit down. We laughed.

In an interesting turn, a few moms and I found ourselves swapping stories. I told them that we were there for an endoscopy and colonoscopy. They grimaced and asked what the prep was like. I told them it would have been simpler if we'd not gone to the family affair out of state, but even with that we we had a pretty straight forward and easy time of the liquid diet for two days, topped off with Miralax. They both groaned and said they'd never be able to handle that. I asked what brought them in that day. One woman's daughter was having a port removed after having battled leukemia for two years (the daughter just turned 4). The other was going on eight hours in the waiting room as her son had his spine fused. Most of his spine had deteriorated from the neuroblastoma tumors that had eaten away his spine. And they didn't want MY trials. I told them I'd take diarrhea and goofy hemoglobin and prepping for scopes ANY day over their trials. Funny how we feel like we can handle some trials over others...

After my chat with them I closed my eyes and fell asleep. I hadn't even realized I had until my buzzer went off, alerting me that Peter was out of the OR. They had said the procedure should only last 45 minutes, an hour tops. It actually took closer to two hours, so I got a good nap. I met with the dr and we talked over some of the things they'd found. Peter looks pretty healthy, aside from a strange, white growth in his stomach and some stomach inflammation. They took lots of biopsies, all of the tests came back negative. So we still have no idea what is going on. But hey, at least we know it is NOT something scary.

A few minutes later I went back to be with Peter as he woke up. He is an absolute grouch coming out of anesthesia. He wanted me to hold him, but he didn't. He wanted to drink, but he didn't. He wanted to eat, but he threw his crackers across the floor. Yeah. He was a happy little tike. Fortunately we were allowed to head home not long after he woke up. They needed to make sure he could keep down food before they would remove his IV (which ended up being on his right foot, and he also had bandaids on every arm and foot, they stuck him for that IV five times, poor guy). We got off and he fell asleep in the car. We spent the rest of the day letting him rest and recover.

So all of the test results came back negative. We still have NO idea what caused the initial problems, or what is causing these long-lasting symptoms. His diapers are still soggy, caustic, and leave him bleeding. His belly is still pretty swollen. His hemoglobin dips and normalizes constantly. But we DO know that he's not dying. We're treating the stomach inflammation with antacids. We're going to keep an eye on that strange growth. We have a follow-up scheduled for next week. But for now we're going to let the little guy rest. He's been such a pincushion, no child should ever have to be a pincushion. So we're going to let him heal up. And I'm going to rest. I'm tired of doctors. I'm tired of hospitals and nurses and terrible hospital food. I'm tired of the headache and the frustration. So I'm going to just accept the answers we got and move on to the next step when we're all rested up.

And so now you  know the rest of the story.

1 comment:

  1. Well that was definitely not what I was hoping (more definitive answers!)...but I'm glad you'll be taking a break from it all. How can any kid look so cute in a hospital gown, though?? I still keep you in my thoughts.