After a trip to the ER last night due to uncontrolled bleeding and the discovery of initial stages of kidney failure, Sam entered into hospice care today.
The plus side of hospice is improved pain management and not needing to make so many painful trips to the clinic for treatment. Also there are doctors and nurses available 24/7 who are able to administer any medication that can make Sam more comfortable. That means no more trips to the ER - they can just come to us. The downside is that while on hospice Sam can no longer receive "life prolonging treatment." It's all about comfort and retaining quality of life at this point. Terrifyingly, Sam can't receive blood or platelet transfusions on hospice, which are currently keeping him alive. We have been told all along his time would be short without his transfusions.
To say that is a difficult trade off is an understatement. It has been an agonizing decision and an awful day. But, at the urging of multiple doctors and in seeing his quality of life diminish so quickly and dramatically, we decided it is time for him to stay home and as comfortable as possible.
We have been told we could always take him off hospice and back into treatment if we see any sign of improvement, though that is unlikely. It still makes me feel a little better knowing the option exists.
Heartbreakingly, the pain medications he's on have made him very, very sleepy and largely unresponsive beyond grunts or jumbled up half sentences.
However, even if he's sleeping, if you lean in really close and whisper in his ear, "I love you Sammy," he'll mumble, "iloveyoutoo" back before drifting off to sleep again. This is keeping me going.