5:00 this morning after labs and vitals were done. At 6:30, he woke up in a happier mood than the last few days, at least until I left his side to get dressed and ready for the day. I didn't leave the room, but he was very upset anyway. At least I know that behavior is normal. He nursed when I took him out of bed, and then I got him to eat some baby food bananas and have a few sips of apple juice from a spoon. Then I dressed him in real clothes for the first time since he was admitted to the hospital. It was fun to see how surprised everyone was to see him looking different!The neurosurgeon came by and said he had no concerns about the MRI. He didn't think the blood at the surgical site was new; he felt that the agitation was due to Morphine withdrawal. He also said the ventricles in Collin's brain were smaller, which is good; things are getting back to normal in his brain and the CSF is draining properly. I never thought I'd reach a point where I wasn't constantly worried about hydrocephalus, but this time I hadn't been...it was a big step for me!
The Risperdal seemed to be working; Collin was much calmer. We still had to play with the dose, because unfortunately he spent most of Friday very drowsy. I want him to be calm, but not so zonked that he can't participate in therapies. We went down to the rehab floor for physical therapy, but Collin was too drowsy to participate for long. Later he did play with the Occupational Therapist for a few minutes, but was still drowsy. The decision was made to keep the dose of Risperdal at .2 mg at night, but changed to .1 mg during the next day to see if he'd be less drowsy.
His oncologist spoke to us again about repeating the first round of chemo. She asked if I'd want to start over the weekend, or just wait until Monday. I said that as long as it wouldn't harm Collin, I'd like to wait until Monday; that way we could get out of the room a few more times before his counts go back down and we have to keep him in his room. She agreed, and said she'd like to give him the weekend to get back to his normal self. So round two of chemo will start on Monday.
In the late afternoon/early evening, the first bolus feed was started through the new feeding tube. Not long after it began, Collin was crying and very uncomfortable. The feeding was put on hold, and pretty quickly afterwards, Collin calmed down. I discussed the quantity of the feed with the nurse practitioner. She explained that nutritionally, Collin needs around a liter of "formula" per day. They wanted to give him 14 hours of continuous feed at a rate of about 40 ml/hr, and three bolus feeds at a rate of 50 ml/hr. That seemed awfully high to me considering the fact that the week before, Collin had two days of vomiting that coincided with raising his continous feeding to 30 ml/hr. So she changed the feed to a continuous 16 hour rate of 35 ml/hr and two bolus feeds of 40 ml/hr. It still seemed high to me, and sure enough, Collin didn't tolerate the bolus feed when it was restarted at the "lower" rate. He was again crying in pain. At that point one of the doctors walked in, and I told him I thought the whole process was counterproductive. He agreed, and said that in a few days when the chemo starts again, the feeds would be stopped for a while anyway because no one feels like eating when the chemo makes you sick. So he dropped Collin back down to 35 ml/hr continuously for sixteen hours a day. Collin still seemed like he was in pain, so a dose of Morphine was given, along with a lower dose of Reglan, which helps empty the stomach faster. We hoped it might help him have a bm as well. Another laxative, this time Cenokot, was also given, along with Simethicone for gas. Finally, Collin was able to go to sleep.
There were some big thunderstorms on Friday evening. Early in the evening, I was able to capture this picture of a rainbow outside of our room.
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