Thursday, June 10

Chemo Round 2, Day 3

Collin and I slept well last night. This morning when he woke up, Collin pushed himself up to a sitting position for the first time. He did it again this afternoon after a nap; the nurse and I watched him push himself up using his right arm! I was amazed! For breakfast, he ate some small pieces of scrambled egg, followed by yogurt to help him swallow the egg since he still can't coordinate his tongue to move the food to the back of his mouth to swallow. He did really well with it. At lunch, the speech therapist fed him mashed potatoes, and some pieces of macaroni and cheese. I held him on my lap while she sat across the little table and fed him. He used to love mashed potatoes, and today it was like the speech therapist couldn't feed him fast enough; he would take a bite, swallow, and point for more. Every so often he would turn and look at me with his little smile as if he was saying, "Look Mom, I'm eating! Mashed potatoes! Isn't it great?" The speech therapist ordered him a pureed diet and arranged for us to borrow a high chair, so at dinner time I put Collin in the high chair and fed him dinner: pureed cheese pizza, pureed brocolli, and pureed pears. He seemed to enjoy everything, although I didn't feed him much pizza, because I didn't think the tomato sauce would be too pleasant when it came back up (he's had some vomiting today because of the chemo, so I knew there was a good chance he wouldn't keep his dinner down). But despite the vomiting, he had definite interest in eating, which is a huge thing for him since he wasn't eating much in the time before he was hospitalized. I was so happy to see him enjoy food today! He also enjoyed playing with the musical instruments that the music therapist brought with her today, and didn't want to give back the shaker egg at the end of her session. He ended up falling asleep clutching the little yellow egg in his hand.

Collin underwent an eight hour EEG today. Once again, he sat still while his head was measured, marked, scrubbed with exfoliant, and the probes were glued to his head and taped to keep them in place. Then his head was wrapped in gauze to keep the probes on in the right place since they had to be on all day. He looked like he'd had another brain surgery. Not once during the day did he pick at the gauze that was wrapped around his head and under his chin. When everything was removed this evening, he cried a little as the tape was peeled off his head, and there were some little areas of brush burn from the exfoliant. I gave him a bath to get the glue off his head and freshen him up after vomiting.

The neurologist came into our room in the early evening to look at the EEG. When I heard he was coming, I thought about what I would say to him if he came in with the same attitude he had Tuesday. Well, he walked into the room with the nurse practitioner, and told me I'd have to leave so he could review the EEG. I was stunned. I looked at him and told him I wasn't going anywhere. He said he would be discussing things that wouldn't make sense to me and could be scary for me to hear, so I should leave. I said, "So I won't listen. I'm not leaving my son. I am his parent and I am not leaving. Besides, he'll get very upset if I leave." The man then said, "Well that's what we need so we can capture it on the EEG." Both the nurse practitioner and I told him it wouldn't be the same thing that happened Tuesday, and she tried to tell him there was no problem discussing anything in front of me. He disagreed, and told her he'd have to talk to her out in the hall. As he left the room, I said, "Excuse me, do you have children?" He said "Yes" and walked out. I stood next to Collin's bed, and suddenly felt very cold and started to shake. I was FURIOUS. After a few minutes, I went into the hall and told him I'd like him to come back into the room when he was done. He finally returned, and I said to him, "As a parent, I hope you never have to watch your child go through what I have watched mine go through for the last month and a half and be treated as rudely as you've treated us." He yelled, "What do you mean? This is why I didn't want to discuss anything with you here, because I knew you wouldn't understand!" I told him how he came in Tuesday night with an attitude that conveyed that he felt we were wasting his time, and after looking at Collin for thirty seconds, declared, "This isn't a seizure, is is a kid who is unhappy" like he was having a tantrum or something, and then left. He started yelling at me that I had no idea how much time he had spent trying to help my son, and he wasn't looking for thanks, blah blah blah. I interrupted him and told him he wasn't hearing me. I explained how the neurosurgeon had been asked something, and how he was able answer courteously and professionally, which was not how this man behaved. He continued to rant that I had no idea what I was talking about, and left. When the nurse practitioner came back, I told her I wanted him off Collin's case; she said he was going to be on a different rotation after tomorrow, so he wouldn't be back. She told me how angry he made her as well, and that she had tried to defend me to him in the hall too. I decided I would be writing a letter of complaint about him, because if he disregards some other child who is in pain the way he disregarded Collin, it could be dangerous. Honestly, he belongs in a room doing research, not interacting with human beings, especially children...and he's a pediatric neurologist!