Discharged from Lurie Children's

So, on Friday, Ben still wasn't getting any better. He still had fevers that were not being controlled by Tylenol. He also started throwing up after every dose of iron. He also was not drinking or eating very much. I called the Cardiology APN to see if we could hold iron to see if that would help his appetite. We got to discussing the situation. She called me back a few minutes later and said our cardiologist wanted him at Lurie. They wanted to make sure that his fevers were not heart related-possibly rejection or a heart infection. So, Klara and I went off to Lurie with Ben. Abby was at school. Joe arranged for her to stay in after care and he picked her up later. I have to say, for having to stay in the hospital with me and Ben for over 7 hours, Klara did amazingly well! She played a bit on the iPad, watched some tv, had lunch and dinner there. But she was amazingly well behaved.

When we got to the ER, they got us immediately back to a room. Ben still had a fever even though I had given him tylenol about 2 hours before that. They started with taking blood for labs and swabbing his nose for viral infections. Then they started up some fluids. The cardiology fellow came in to talk to me a little bit later and suggested we put him on antibiotics, *just in case something grows in the bacterial cultures*. I did not like this idea at all since he had been on antibiotics SO much over the last couple of months and I let her know .She was sympathetic and said we could wait a bit to see. The cardiologist and a whole team of people came in a couple of hours later. The cardiologist also wanted him on antibiotics in case something grew. He was very very definite about this. Because of his immunocompomised status, he didn't want to wait the 24-48 hours for something to grow, he wanted to start them right away. I was very unhappy with this, but decided to do it.

About 5 pm, we got up to our room on the CCU. Klara was actually, technically, not allowed up there because Ben was on isolation precautions. But, being that we had come through the ER and I had no where else to put her, they understood. And she stayed until 8 when Joe picked her up. When we got up there, I again wanted to talk to the dr, because in the ER, they discovered Ben had thrush. Which is due to antibiotics. My thinking, why give more antibiotics? Obviously antibiotics are causing bad things. And, today (sunday) we found out that nothing grew anyways. Which makes me more frustrated that they gave antibiotics for nothing.

Feeling pretty sick

Friday he was very sick looking. Saturday morning and part of the evening he still seemed pretty sick. BUT, he had his last fever register at midnight Friday/Saturday. So, that was good. By this morning, Sunday, he was doing a LOT better. He was stealing Joe's breakfast. When I got there he was sleeping. But, when he woke up, after resting a little more, he was hungry and ate 2 and a half chicken nuggets and 10 tater tots and some fruit snacks. He also drank about 4 oz of water. He was doing really well and his fever had not really come back. The doctor decided that we could go home today. We left around 6 pm today. On the way home, he was laughing at Abby in the car. He was SO happy to be unhooked from all of his wires. He is sleeping now. Has been since around 9:30. Hoping he will sleep the rest of the night. He still is a little weak. He doesn't really want to walk anywhere and he sits down. We have to have labs done and follow up with the pedi this week. We are just so glad to be home!

Ready to go home!