MRI Comparison

This evening, Dr. Wisoff sat down and showed us the comparisons of the pre-op and post-op MRIs. The images confirm that he did remove 95 – 98% of the disease. There are two areas in addition to the one where he knew he left tumor where there may still be tumor there. However, it can be difficult to distinguish the tumor from other artifacts such as blood.

Most importantly, he said that the scans show that there was no discernable damage caused by the surgery. The brain stem is unaffected by the massive resection. This is unrelated to the nerve impairment that we have reported on earlier.

Colin remains on the ventilator and they will attempt extubation tomorrow. The reason given to us was that his surgery went so late last night that he has not been on the ventilator that long, but we wonder if they also saw something in a scope exam that made them want to wait.

We do know that Colin’s gag reflex works, according to the nurses. This is a good sign, though not everything we need to extubate him successfully. The big issue is whether the vocal cords are strong enough to protect his airway (from saliva and other fluids, etc.).

It may be several more days (assuming successful extubation) before they challenge his swallowing. Also, even if he has swallowing deficits, this may partly be due to the intubation itself, which can have that effect.

Colin is salt wasting a bit although, without the ventricular drain, this has been relatively mild and they have only been giving some regular saline. His face is quite puffy from lying on his stomach, and he has an arterial line and another peripheral IV. The port is no longer accessed because he had to be placed on his stomach/chest for the surgery, and the access on his chest would have been impossible to maintain.

Generally speaking, Colin looks good — his color seems normal and he has been sedated pretty well to keep him calm, so he looks peaceful. This also makes him not especially reactive to our voices and touch, but he and his little brain deserve the rest.

In fact, Colin’s relative vigor was especially apparent this afternoon after Mom saw a man in a wheelchair by the first floor elevators receive emergency medical attention. He was gaunt and waxen, limply propped up in the wheelchair until somebody placed him on the floor for resuscitation. Manual CPR moved his chest, but there was no evidence of any response on his part. The woman who had brought him to the hospital (it’s not clear why he was by the elevators or what his destination was) said that he had had a liver transplant a month before.

Seeing Colin again, even sedated and quiescent, his vitality is apparent. Maybe it’s the plump decadron cheeks, but even if the only movement in his body seems to come from the ventilator protruding from the corner of his mouth, he looks like a normal little boy who has accidentally ended up tangled in a strange variety of tubes and wires.

Our other normal little boy had a great day at art camp and is apparently learning how to draw, though we have yet to determine whether his artistic attention will expand beyond Star Wars. We reported to him that his little brother came through surgery and is doing well, though it’s uncertain whether Aidan was actually paying attention or was too nervous/playful to keep from bopping off and away from the phone. This weekend, he will get a chance to come to New York and, among other things, visit his brother.

And the other normal thing was that Mom and Dad got to go out to dinner in New York. It was a decent little place, but it was almost disorienting to be together alone in a non-clinical setting. With the nurses keeping a watchful eye over sleepy Colin, we felt comfortable leaving the hospital. One benefit of being in New York is that the city provides an immediate contrast to the hospital environment. Although there are plenty of hospital-related people in the near vicinity, especially staff coming to and from work, the restaurants, stores, and bustle of the city constitute a quick escape from the tatty-clinical environment of the 9th floor.

It is safe to say that the quality of the medical treatment far exceeds the quality of the environs here, but we have yet to meet a parent that would prefer to be elsewhere.