Wednesday, June 2

Collin woke up very agitated again Wednesday morning, and again needed a dose of Ativan. He was taken off the Morphine pump a few days before, and was instead given Morphine at regularly scheduled intervals. His oncologist wondered if his agitation could be due to withdrawal from the Morphine, and switched him to Methodone, which is a much longer acting pain medication than the Morphine.

There are a few therapy dogs that come to visit the kids in the hospital; they take turns coming every Wednesday in the early evening. The dogs are not allowed in the heme/onc wing because the wing has it's own special filtration system, but if the kids in the wing are healthy enough, they can go out to the central area where the dogs are allowed. I had asked about getting Collin out to see the dog; since his counts were high, he would be allowed to leave the unit for a little while. So Wednesday, Collin was disconnected from his IVs and feeding tube a few times, so we were able to take a walk around the hospital, go sit outside for a few minutes, and go to the third floor to see the rehab gym. It was a nice change from being in our small room all day. I hoped the day would be fun, but unfortunately Collin continued to have episodes of agitation and restlessness throughout the day. Some were understandable, like when he was wearing the eye patch. There were occasional times he could be distracted or redirected for a few minutes, but the underlying agitation continued throughout the day. It wasn't normal for him, and I wondered if he was overstimulated by getting out of the room. He was only able to sleep for about 40 minutes after lunch, even though he looked exhausted. His oncologist felt that since he's not in his normal environment, and is constantly being bothered by noises, people coming in and out of the room to do vital signs, give medications, etc. that it's not unusual to need help getting to sleep. She said he could have some Benadryl before bed. So he had Benadryl around 5:30 pm and fell asleep. I was glad he was finally asleep, but disappointed because there was no way I was going to wake him up to take him to see the therapy dog. But he was awake within an hour, and unable to get back to sleep. Eventually a dose of Ativan was given, but even then he couldn't get to sleep. He couldn't be still, and he was moving so much I was unable to continue holding him, so I put him in his bed. He continued to move and turn all around the bed, getting the feeding tube and IV lines tangled into knots and wrapped all around himself; he even managed to get one of the IV lines disconnected. I honestly felt like taking scissors and just cutting all the lines off. I grabbed the camera, and took two videos of him thrashing around the bed, hitting his head on the side rail, etc. to show the doctors in the morning. In tears, I picked Collin up again to try to comfort him, and finally demanded to see the covering doctor. Of course the resident that came has never seen Collin before, but he spoke to Collin's oncologist on the phone. He came back, gave me a few options, and asked if I wanted him to stop the Methodone and restarted the Morphine pump. I thought about it and then said, "I don't know, I'm not the expert!" So he made a few decisions like putting the tube feed on hold to see if Collin's belly was bothering him, and keeping the Methodone for the time being. Collin finally passed out from exhaustion. A few minutes later, the respiratory therapist came in. I told him nicely that I wanted to skip the breathing treatment that night, unless he wanted to spend his next two hours putting Collin back to sleep. He said, "No, I'm past that stage, my kids are older." I said, "So you can appreciate my frustration!" He said he could, told me I could do the breathing treatment when Collin woke up, and wished me a good night. I finally got Collin into his bed, and collapsed from exhaustion myself.