There is no such thing as certainty. Colin’s surgery has been moved up to Tuesday, following a trip to the emergency room late Sunday. All day, he had seemed more agitated than usual and probably experiencing pain. He slept only while nursing and had a difficult time going to sleep. When he finally did, he awoke crying.
Given the circumstances and under doctor’s intructions, we decided to take him directly to NYU. The trip was the culmination of a certain amount of anxiety regarding his condition. The longer time has worn on, the more we have worried about the state of the tumor and its effects.
The tumor can both grow and move, and we really don’t have a handle on the possible effects of the early surgery itself. While it is possible to dismiss Colin’s behavior as side effects of the steroid or irritation from the incision, this is one of those situations where it is constitutionally impossible (and medically unwise) to do so.
While we have been constantly on alert for signs of hydrocephaly, it is becoming increasingly clear that this has really not been a big problem for Colin. His hydrocephaly has remained unchanged from before the surgery, neither improving nor worsening. It is likely that his brain has already compensated for the condition and there has never been evidence of high intracranial pressure.
From the first neurological exam in Westchester, we knew that he did not have papilledema, which is swelling inside the eye caused by high intracranial pressure. The fluid systems in the brain and eye are connected, so the eye can reveal this problem within the brain.
Today, NYU ophthalmologists performed a detailed exam to check for papilledema and confirmed that he did not have any evidence of it in either eye. If there had been signs, the doctors would likely have ordered a spinal tap. This doesn’t mean that the pressure isn’t higher than normal, but it isn’t dangerously high.
Also, we realize that Colin didn’t have the classic signs of hydrocephalus. His symptoms can all be explained by the tumor’s interaction with his spine and brain. As a parent, this all seems very alarming, and it was unimaginably reassuring that Dr. Wisoff elected to move up surgery.
Last night, they determined that he did not need emergency measures to relieve the pressure, and today they confirmed that there was no urgency to the matter. However, the change in Colin’s condition warranted a reassessment of the timing of the surgery.
Dr. Wisoff explained that a child who is sick enough to be in the hospital should get surgery as soon as possible. At best, sitting around and waiting is a waste of time; at worst, it ignores a possible change in situation. His perspective is both logical and confirms why we are so comfortable with our decision to come to NYU for Colin’s treatment.
Again and again, we hear from the staff here of how wonderful Dr. Wisoff is. One neurosurgical resident in particular said that he would pick Dr. Wisoff to treat his own child.
The facilities here are not as comfortable as those in Westchester, but that is a small matter under the circumstances. Fortunately, Larry Bock gave us an overview of the accomodations so we were not caught by surprise. The PICU is organized into pods with four beds each. There is a single private room that is used for isolation.
There is no family lounge in the unit, so the families do not tend to mingle much. Since this is not a trauma center, the cases tend to be post-operative, with many returning home fairly quickly after coming here. One teenager left within five hours of arrival. There are more serious surgical cases as well, but it seems like most transition to the regular pediatric floor, which is on the other side of the 9th floor, fairly quickly.
It is pretty much impossible to accomodate a lot of visitors at once and the policy technically restricts the number to two people at the bedside at any one time. However, the staff does not enforce this strictly until late at night. The limited space will be a consideration to anybody who visits Colin post-surgically.
The hospital is not a children’s hospital, so it is not especially suited to children who visit. There is no fire truck or fish tank here! They do have a wonderful child life staff and Colin enjoyed a visit by Martha, the music therapist, who got through to him by singing songs about food. How clever of her! He really enjoyed the singing and her improvisations.
In the morning, the doctors had Colin stop taking in food while they ascertained whether he would receive surgery today or not. Since that restriction disappeared and in anticipation of tomorrow’s surgery, we have been feeding him as much as he wants.
The dietary services here are fairly good and more tenable than we have become accustomed to. He is certainly not starving to death!
Tomorrow, the schedule is about a half-hour to an hour later than it would have been on Wednesday. The resection will begin at about 12:30 to 1:00. He will return to the PICU at around 5:00. The actual tumor removal will only take 3 hours or so but there is additional time to open and close his precious noggin.
We will post an update on how much Dr. Wisoff will be able to remove and any other relevant tid-bits tomorrow!