Monday, June 7

Chemo Round 2, Day 0

So last night wasn't as calm as I had hoped it would be. Very early this morning, Collin woke up crying and was inconsolable. We gave him Simethicone to see if he had gas, but it didn't help calm him down, so he got another dose of Morphine. I sat with him while I waited to see if the Morpine would help; after a while, he was able to get back to sleep. I had pulled the rocker next to his bed, and fell asleep sitting in the rocker with my head on the mattress.

This morning Collin had another episode of inconsolable agitation. His nurse gave him a dose of Ativan, which did a nice job of calming him down. He went on to have a good morning, trying to talk, interacting with others, and even sitting unsupported for short times during his physical therapy session. After PT he looked so tired, but didn't go to sleep. At lunch, he kept pointing to my lunch tray, and it seemed like he wanted to eat regular food instead of the baby food I offered. After lunch I nursed him and we both fell asleep for a little while. Since he was sleeping, OT and ST said they'd see him tomorrow.

This afternoon, Collin suddenly started another episode of inconsolable agitation. While he was in the midst of it, the attending physician and the fellow came in on rounds and saw the state Collin was in. They immediately tried to brainstorm to see if there was anything we were missing that could be causing him to behave that way. Then his nurse suggested that it might be the Reglan; at least the last three episodes coincided with the Reglan dose times. So the doctors decided to give him Ativan to calm him, and they stayed to watch and see if he was able to calm down. In just a few minutes after the Ativan was given, Collin was calm, trying to talk and interact more, like nothing had just happened. So the decision was made to hold the Reglan to see if these episodes can be avoided. Then the doctors took the time to come up with a plan in case he had another episode tonight even though he wouldn't be getting Reglan. I really appreciated the fact that they stayed for so long and really tried to come up with a plan; I finally felt like they heard me and recognized that this behavior wasn't normal. If it turns out not to have anything to do with the Reglan, Collin will be put on a regularly scheduled dose of Ativan to help keep him calm, and we will continue to try to figure out what the cause of the agitation is. It's so hard since Collin can't just tell us what the problem is, and it is very distressing to see him in such a state.

Collin received the first two chemo drugs of this round starting at 5:00 this evening. The Vincristine was just a syringe pushed into his IV line, and the Cisplatin was hung on the IV around 5:30 and should finish around 11:30 tonight. Normally Collin would have been pre-medicated with Benadryl and Reglan along with Zofran to keep him from vomiting, but since the Ativan can help with nausea, we'll see how he does. Tonight Collin looked exhausted, but wasn't able to get to sleep as easily as he did the last few nights. He was fussing and instead of calming down, it started to escalate, so a dose of Ativan was given. It took a while, but he's sleeping peacefully now, so I'm hoping it's a restful night.