Saturday, August 14

Thursday morning, Collin developed a fever, so as per protocol he was immediately started on two broad spectrum antibiotics, and blood was sent to be cultured to try to identify any infection. He wasn't himself all day, and spent the afternoon sleeping on me. Last night, or early this morning really, around 2:30 am, he woke up fussing, and when I tried to get him back to sleep, I found out he was wet, and so was the bed. Evidently, one of the aides had come in and changed his diaper, but didn't get it on very well. So, I had to change the whole bed and get him cleaned up.

As a result of being awake at 2:30 am, plus just not feeling well, Collin slept in Friday morning. It was actually surprising, because he's usually awake around the same time (around 6:30) every morning no matter what his night is like. But Friday morning he slept in, so I tried to catch the staff as they came into the room and asked them to please be quiet as he was still asleep. Of course they obliged, and said they'd come back when he was awake. But then the man who scans the IV and feeding pumps for inventory came in, and before I could shush him, he spoke in his loud, deep voice, and up popped Collin in the bed. As soon as I looked at him I was shocked that his eyes seemed more turned out than I'd seen them in a long time, but it didn't last. I made a mental note to mention it to the ophthalmologist (I had been waiting a few days for him to come see Collin again). Collin seemed like he was in a good mood, and pointed to his breakfast tray. I hoped it meant he was feeling a little better than yesterday. So I changed his diaper and got ready to put him in his highchair to feed him breakfast, and in comes the ophthalmologist...and his resident. And the attending physician...and his resident. And our nurse. Suddenly, all these peple are there to see Collin, and all he wanted to do was eat his breakfast! It was so incredibly frustrating!

The ophthalmologist started looking in Collin's eyes. I told him I feel Collin sees out of his left eye better, and he will turn his head to use that eye. He agreed that the left eye is the stronger eye, and now instead of patching each eye for two hours a day on alternating days, he wants me to patch just the left eye for two to three hours every day. The purpose of patching is to force Collin's brain to continue to pay attention to the weaker eye, to preserve the vision in that eye. Then, in about six months, he will do a surgery on the eyes to help them turn out to a more normal position, and hopefully Collin will be able to see better. Patching the left eye is not fun for two hours, so I can imagine how well three hours will go over. Poor Collin spends that time basically staring at the bridge of his nose, and, rightly so, is very unhappy the whole time the patch is on.

I also spoke to the ophthalmologist about the fact that Collin's right eye is often very red and bloodshot. I am putting in lubricating drops a few times a day, which seems to help with the irritation. But because the right side of Collin's face has no movement, his right eye is open wider than his left eye, and doesn't always close all the way when Collin is asleep. So he checked to make sure there are no scratches on the cornea that would contribute to the irritation; thankfully there were none. So he recommended a lubricating ointment that can be put on the eye when Collin goes to sleep to help moisturize the eye and reduce the irritation. The ophthalmologist said that the sixth and seventh nerves are close together, and would have both been affected by the surgery. The sixth nerve controls eye movement, and the seventh nerve controls facial movement. Over time, as Collin recovers more from the surgery, both nerves may heal at least a bit, but no one knows how long it will take or how much they will heal. It is so hard for me to wait and see. I wish Collin looked more like himself. It's hard to know that when we're out in public, people stare at him because of how he looks. Thankfully he's too young to notice it, but I notice, and one day Neya may notice.

Today Collin seemed to feel better than he had the last two days. He seemed more interested in eating, and overall seemed more like himself. I commented to his doctor that it even seems like the mucositis is better already, and didn't seem nearly as bad as it has been in the past, and she said she has seen that with other kids as well. She thinks it may be because the first few rounds of chemo are done soon after the tumor is removed, and at that point kids are still compromised nutritionally because they've been vomiting and losing weight due to the tumor. By this point in treatment however, they are stronger nutritionally because they have feeding tubes and/or may be eating better on their own. This is cetainly the case with Collin; he is now eating, still gets additional nutrition through his NG tube, and has put on weight.

Bill and Neya came to the hospital after lunch. We spent the day just hanging out and having fun. Neya had Collin finger painting with Crayola Color Wonder Finger Paints, playing catch, playing on the iPad, and playing with toys. We did a lot of laughing, and had a fun and relaxing day together.