On Tuesday we met for a couple of hours with Philip's primary doctor and a palliative care specialist to discuss a change in how they observe and respond to Philip’s medical needs. What has been happening is, as his health deteriorates, the monitors he is hooked up to frequently report his “numbers” going below, or above, the normal levels. At that point the nurses then respond to the situation with appropriate measures. However, as this situation repeats itself more and more frequently, the medical response to whatever the concern is seems to be creating more discomfort for Philip than the actual concern itself.
As we began to consider how this process was developing, it became more evident that to accomplish our primary goal for Philip (to make him comfortable) that we may need to shift away from responding every time the monitor numbers say something is different than normal, and rather to begin treating him based on more outward observations of discomfort. Moving forward, they won’t have him hooked up to the monitors continually, but rather just do a pain assessment check at regular intervals and respond as needed. If they observe or sense anything that may seem to be discomfort, they will respond pretty quickly with medication to make him comfortable.
Because it is difficult with Philip to tell when he is in discomfort, he is already taking a regular dosage of a high-level pain medication. As we make some of the adjustments in his care, we’ve chosen to increase this dosage, just to make sure that he is comfortable. The next step--if they/we suspect he is uncomfortable, they will use morphine as frequently as needed to eliminate any question of whether he is in pain.
Another aspect of his care we discussed was the number of medications he is on. Through a conversation with a doctor a year ago, we knew that as the disease progressed, the number of medications he would need to be on would steadily increase, so what I’m about to say wasn’t really a surprise to us, just something we needed to give consideration. A term that came up in Tuesday’s meeting was “polypharmacy”. Polypharmacy is used to refer to patients who are taking more than 6 medications at the same time. Basically once a patient hits that number of medications, the likelihood of interactions between the medications goes much higher. Philip is currently taking 34 medications to try to keep him comfortable, some only as needed. Though it will never get close to the “6” number, we have decided to begin trying to reduce the number of medications to help minimize the risk of interactions. We’re not talking about reducing seizure medications, but rather some allergy meds and other stuff he is taking, like vitamin d and melatonin. As Philip enters the latter stages of the disease, and pain medications allow him to be calmer and more sedated, some of the medications that once were a help, may not have the same purpose as they once did which allows us to make some of those adjustments.
For the past probably 9 months we have had the sense that Philip would probably not live through this year. In many ways it is a similar sense to how God has prepared us before for big changes coming up—not necessarily something tangible, but rather just the way God has worked. We asked the doctors at the meeting Tuesday what they were seeing from a medical standpoint regarding how much longer Philip has before he would transition to Heaven. While it is impossible to know for certain, the basic response was that it is likely we are pretty correct in thinking that he will pass away over the next few months. While there is nothing immediate that can be pinpointed to give a time frame, he is getting weaker and the disease is progressing. With that said, we appreciate your prayers for his comfort and calmness during this time, and for wisdom and comfort for our family as God continues to prepare us for the months ahead. We are not in despair (though, at times grieving) over these changes or what is coming. Rather, this is just the next step of the journey, and the same God who has proven faithful in every situation in the past, is the same God who will continue to be faithful to us in the months ahead.