Saturday was a big visiting day for Colin. His overall condition was good and improving a little bit every day, though he continues to suffer from bouts of vomiting. He receives anti-emetics to control it, but this is a side effect to be expected from the area where brain surgery took place.
The doctors also adjusted his brain drain and are getting closer to clamping it off and monitoring the pressure. Medically, the drain really is the only reason that he remains in the ICU, as his vitals need to be monitored constantly in the event of a change in his condition.
For example, on Friday night, his temperature started going up a bit. He is already receiving Tylenol and, at 101, they wanted to make sure it didn’t go any higher. The nurse packed ice packs around him, which worked nicely.
On Saturday morning, Colin’s grip on both left and right fists was much stronger. We try to communicate through hand squeezes, although he became less interested in doing this as the day wore on. The anti-emetic tends to make people sleepy and he spent much of the day drifting in and out.
Colin’s favorite visitor of the day was his big brother, Aidan! Aidan got to climb into bed next to him. We can honestly report that this is the only person who can comfortably snuggle next to Colin in the hospital bed. Mom does it a lot, but not without some (worthwhile) discomfort.
Probably the most disconcerting aspect of Colin’s recovery is his overall flat affect. He is a very expressive child and we are all accustomed to him making all kinds of charming and amusing faces. We have seen glimmers of smiles but, to be fair, he just had brain surgery and has IVs and the drain in him, which can’t be comfortable.
Just sitting and watching TV with Aidan was the most normal thing he’s done since he entered the hospital a week ago. Aidan and Mom went home on Saturday night to get a good night’s rest and are returning on Sunday for a welcome visit with little brother.
On Saturday night, we had a family dinner, also for the first time in a week. Ian (of course) found the best Chinese restaurant in the area and (of course) cajoled them into delivering to the hospital even though they stopped delivering here a while ago.
Colin had noshed on some jello and the most unbelievably gelatinous chicken noodle soup, but he was eying the chicken fried rice quite jealously. He enjoyed the rice, chicken, and edamame beans (this restaurant puts beans in the rice!) and finished up with a bit of chocolate chip cookie.
Although we are trying to feed Colin in small quantities to make it easier on his stomach, anybody who is familiar with his appetite will not be surprised that this is a difficult feat. Despite surgery and several days with little or no food, he has not lost any weight. On Friday, we switched from a crib to a regular hospital bed; the bed has a scale function built into it, so the nurses took the opportunity to weigh him. The new bed is much better though it has an automated function to reduce bed sores that inflates and deflates different sectors of the mattress. This can be alarming, especially when you think that you have accidentally hit a button and changed his head height. However, this is an infinitely more comfortable bed for Colin and anybody who snuggles next to him.
The neurosurgery team replaced the dressings on Colin’s neck and around the drain yesterday. Both are looking “excellent.” Though Colin did not enjoy the process at all, Mom was able to hold him while they did it. And of course we are happy to receive a good report on the drain. The cerebral spinal fluid (CSF) has consistently tested negative for infection; cytology reports on the presence of cancer cells in the fluid will be forthcoming.
On Sunday morning, Dad reports that Colin enjoyed listening to Charlie Parker and shaking the egg shaker! This is a very encouraging sign. We have tried to play music much of the time, as Colin is a big fan, but this is the biggest response we have gotten from him. Dr. Tobias, one of the neurosurgeons, said that he seems brighter every day.
One of the pediatric oncologists visited Colin yesterday. Dr. Sandoval is swarthy, chiseled and athletic with a bone crushing handshake. He showed up in form fitting microfiber Nike togs on one side of the other of a presumably rigorous workout. In his presence, you sense that he may at any moment sweep your child up in his arms and physically pull him away from the cancer. I told him that Colin has a strong constitution, if that counts for anything. In a very serious and reassuring way, he responded that it does.