Colin continues to do well post-operatively. As we have experienced in the past, he comes out of sedation very quickly, so they administered fentanyl in order to keep him quiet. However, the fentanyl is a longer-acting medication that is not ideal to have in his system when they try to extubate him.
Right now, they are switching him to a different mix of medications in order to facilitate extubation. Also, he is periodically receiving nebulizer treatments because of mild wheezing.
This morning, he was responsive to Mom’s voice and was squeezed her hand! All of his limbs are definitely working, though there is no way to do a proper assessment until he is less sedated.
It is possible that they will attempt to do a swallow challenge later today, assuming that extubation goes well. However, there is no terrific rush on this point. It is more important to proceed in step-wise fashion and make sure that his breathing is in good order.
The neuro-oncology group stopped by this morning to say hello, and we finally met Jeff Allen, the chief neuro-oncologist. The group is waiting for a post-operative MRI that will take place this afternoon (scheduled for 1 pm, but one never knows). The new MRI will include a more detailed study of the areas where they have seen or suspected metastasis as well as provide imaging to do an estimate of the percentage resection of the tumor.
It is too early for them to begin discussing a treatment plan, and the group prefers to present a single cohesive plan rather than having various individuals throw out ideas before we have adequate information. He said that we should have a plan together by next Wednesday, which seems eons away. The most important thing right now is for Colin to recover sufficiently from his surgery and for us to make sure that he is properly nourished for the long road ahead.
As we have commented many times before, nourishment has not been Colin’s problem! If he experiences any swallowing deficits, I imagine that his conscious brain will at least be strongly incentivized to remedy the problem. In any event, his appetite is good and he is not a picky eater, so this puts him in good stead to withstand radiation and/or chemo well.
Dr. Allen stressed the fact that this is a pediatric neuro-oncology group with experience and considerable resources here in the U.S. and even, if necessary, abroad. If we hadn’t already had the sense that we are in good hands, he means to assure is that we really are.
We are “scared but hopeful” and said as much to the neuro-oncology team. As always, the important thing is to focus on the things immediately in front of us while keeping a watchful eye on the horizon.