Wednesday, April 28

Wednesday Collin's blood pressure seemed a bit high at times, and he was moaning more. He was also still rubbing at his face and head. We figured he'd been through a lot, so we tried to keep him as comfortable as possible with the help of Morphine. That afternoon we were moved out of the IMC into a regular room. That was exciting; finally we had a private little room that had it's own bathroom. We were able to unpack some things and feel a bit more settled in. That night I again laid next to Collin in his bed, and just nursed him and held him. He settled into a peaceful sleep for over an hour. But suddenly, out of the blue, he woke up screaming, and nothing we could do seemed to comfort him. Since the NJ tube had been placed the day before, we had gone through four pumps for it; each pump seemed to have different things that went wrong. Our nurse decided to have X-Ray come up and take another look to make sure the tube was still in the right place; we began to wonder if the tube was either kinked or in the wrong place, thereby causing Collin discomfort and the pumps not to work right. But the X-Ray showed the tube was fine, so our nurse called Neurosurgery to have them check Collin because of his agitation. They came up and assessed him, and at around 2 am, they decided to take him right away for another CT scan. I held Collin as they pushed me in a wheelchair down to the radiology department. When we got off the elevator, I felt like I couldn't breathe, because this was the very place we were first told our baby had a brain tumor. They wheeled me into the room where the scan would be done, and Bill and I placed Collin on the bed part of the machine and donned lead aprons. We watched them do the scan, and then when it was over, I held Collin as they wheeled us back up to the room. Pretty quickly after we got back to the room, the neurosurgery residents returned to tell us they were taking Collin back to the PICU immediately to place an EVD; the scan showed that his CSF had not been draining, so there was fluid pressure building up in his head (aka hydrocephalus). Now we knew why he was agitated and still rubbing at his face and head; he was still in pain, the level of which would have brought an adult to their knees. They quickly took Collin to the PICU, and we re-packed our belongings. Since we couldn't be with him until after they were done placing the drain, we took most of our stuff and stowed it in the car, because there wasn't anywhere else to keep it. Then, terrified, we waited until we could be with Collin.