We are back in our room on the oncology HOT unit. Yesterday afternoon both the PICU and oncology doctors felt that Cade looked good compared to the day prior. They were happy with his progression and that they were able to get him back on oral Tylenol and see the fever remain controlled. Had he spiked way up again like before on the oral dose, then they would have returned to giving him IV Tylenol and kept him in the PICU another night to continue to monitor him. Since that wasn’t the case and he responded well to the oral dose, the choice was left up to me and whatever I was comfortable with. They would happily keep him overnight again and send us back in the morning, or if I wanted to, they could send us back over later that night. At that time the main things he was requiring was morphine occasionally for his pain control and he would begin to need fluid replacement for his diarrhea output and these could be done on either unit.
The nurses we had were wonderful in the PICU, but if the teams were both indifferent, I felt that it would be best for Cade if we went back to the unit he was familiar with. Less equipment. Less wires for him to be connected to. More freedom to move around the room. It was what he needed. Chris was in agreement. We were packed up and snuggled in bed together for our ride back to the HOT unit by 6pm. As we were wheeled in the unit past the nurses station, Cade was greated by 5 or 6 of some of his favorite nurses saying “Hi Cade!” and “welcome back!” and waved which was so sweet. He loved it. Miss Brooke and Miss Emilie were at his door welcoming him back to his room even though they weren’t going to have him. One of his fave’s Miss Alyse had him and Miss Kiera was just right next door so he got to see her too. He called for Kiera out his door in this adorable multi pitched tone as he said her name. It melted her heart.
He got a fever again over night up over 102 so he got blood cultures drawn again per their protocol. Every 24hr that goes by and he spikes a fever again. So far the other 2 sets are negative, which is good. Everyone was happy to see us back today, which was warming. We are in isolation until the viral panel results were back and Cade struggled with this this morning. He is used to going everywhere with me. We go get coffee from the kitchen. We go do laundry. Go to the play room. Just cruise the halls. And the fact that he couldn’t leave the room was making him so sad. In rounds they changed around his antibiotics a little bit. We got to get rid of the Vancomycin, which was the one that caused the side effect, so that was a big bonus. Then they changed one to another that gave better broader coverage to cover any possible bacteria in the gut that could form from the mucositis. The doctors were all very happy to see how well he looked today compared to two days ago. He is still definitely fighting an infection and took a good nap this afternoon. His fever has thankfully stayed around 100.6 most of the day and that was without Tylenol, which is a great improvement.
I also learned late this afternoon that our isolation situation is not going to change at all for the rest of the time that we are here. Cade did not have any of the respiratory viruses, however, he did test positive for the enterovirus. The doctor said that this would explain the fevers as well as the diarrhea. And could be adding to the abdominal pain/cramping along with the mucositis that they are still certain he has in addition. But at least we have an answer now. Now, we just unfortunately wait for it to run its course. But just like the mucositis, it will unlikely resolve until his blood counts begin to come up and give his body the ability to fight the infections off. This could very well be another week yet, which sucks!! This kid is going to go absolutely stir crazy being stuck in this room all day and all night. I’m so sad for him. I keep trying to explain it to him to make sure he knows it’s not a punishment and it is not his fault at all. It is just the rules right now because we have to keep all of the other kids on the unit safe too. Kelsey from child life is wonderful and she is a huge help coming by to play and bring him different toys to help keep his spirits up. Today they played playdough with cute little sea creatures that did different things with the playdough. Art therapy tried to come by too and see if he wanted to paint, but he wasn’t feeling good. Poor guy had been to the bathroom about three times within an hour or so from waking up from his nap.
The doctors also decided, since at this point he is on isolation anyways now, then we will send off a stool sample just to make sure the diarrhea isn’t from him getting cdiff, which is an infection that you can get from being on a lot of antibiotics. If it comes back positive, then he’s already on isolation and they can treat it and get rid of it. If it’s negative, then we know it is just diarrhea from the enterovirus and mucositis. The nurse walked in with the little cup to get the sample and what does Cade say? “Can I juicy fart in to that cup?” I had to ask him to repeat what he said because I truly couldn’t believe he had just said that. I laughed. Oh Cade. Good to have you back buddy! ❤️
It has overall, been an uneventful day. And I’ll take it after these last couple of days. We’ve played. We’ve watched movies. Read books. Face timed all of our family. He had a good time talking to his cousin Eli for almost an hour, which was super cute. Now we just have to get through the next week in this room together with enough things to distract us and make the time go by. I’m praying his counts come up faster than they anticipate. 🙏🏼 🙏🏼
Our Warrior Journey 