Friday, May 7

Collin had another episode of vomiting overnight. The vomiting scares me because it can be a symptom of hydrocephalus. This morning when the neurosurgeon made rounds, he asked if Collin had any facial expression yet. He doesn't; he has a very flat, blank look on his face all the time. The neurosurgeon said that is normal after a posterior fossa tumor resection surgery like Collin's, and hopefully it will improve over time. He said one of the first things that will come back will be Collin closing his eyes when he's sleeping; right now most of the time they are open when he is asleep. The neurosurgeon said there's no way to know how long it will take, but that he is amazed at the progress kids make in six months. This shocked me; six months seems like a very long time to wait to see my baby smile again.

The speech therapist came to work with Collin today. She wanted to see how he would do with spoon feeding using yogurt or applesauce. If we could get him to eat a little something, she would be able to do a swallow study, where she could take X-Ray type pictures to see if he can coordinate his tongue to get the food to the back of the mouth to swallow, and make sure the food goes down the esophagus and not into the lungs. If the food were to go into his lungs, he could develop aspiration pneumonia, which his body would have trouble fighting once the chemo wipes out his immune system. After he nursed for a little while, I tried putting the yogurt on my finger and putting it on his lips to see if he was interested; but before I could even put my finger on his lips, he started screaming and pushing my finger away. That ended the speech therapy session; eating has got to be a pleasant experience for him, and cannot be forced. We will keep trying as he let's us know he is ready.

The physical therapist came to work with Collin again. Collin again became agitated during the therapy, and when it was over I was trying to comfort him by stroking and patting him the way I would at home. But he just became more agitated. The physical therapist laid her hands on Collin's chest and stomach, and applied a gentle, constant pressure. He calmed down almost right away. It was very upsetting to me not to even know how to comfort my baby anymore. The physical therapist explained that right now Collin has to relearn how to process the things that stimulate him, like touch, sound, movement, etc. For some reason, applying gentle pressure can help a child organize and process information and is therefore soothing. I asked if a weighted blanket would help, and she said it might. She said there are these things that look like long stuffed gloves that are weighted, and they can be placed or around babies to help soothe them. I had seen them online and thought they were kind of creepy, but since I just saw how the constant gentle pressure helped, I went to the gift shop and bought two. It hit me that Collin is like a newborn again; he has to learn how to process information, hold his head up, sit up, eat, and walk all over again. And he has to do all of this while we ply his body full of poison that will make him sick, give him mouth sores, make his hair fall out, and damage his hearing while it tries to kill the cancer cells.   

Now that the drain was removed, Collin didn't need to be in the PICU anymore, so we were moved to the hematology/oncology wing where he will receive his chemotherapy. The rooms are private, so finally he is in a calmer, quieter environment. It took a while to get used to Collin not being hooked up to monitors that showed his heart rate, oxygen saturation, blood pressure, etc. I was hoping that the first night of this move to a normal room would go more smoothly than the last time we moved (a few hours before he was rushed for the EVD placement). However, overnight he started vomiting and having diarrhea again, and there was no difference between the two. A portable X-Ray machine was brought to his bed to check his belly for an obstruction, but none was found. Neurosurgery came to assess him, but didn't seem to think it was related to his head. I told the resident about the recent vomiting over the last few days, and that a culture had been sent to check for c-diff, but that the last time I had asked about the result, it wasn't back yet. He checked, and came back to tell me the c-diff was positive, so Collin was started on another antibiotic to treat that. Our first night in our new room wasn't very restful at all.