It's been awhile since I've posted any update on Patrick, but it was hard to know what to say. Patrick had plateaued, continuing to demonstrate brief moments of wakefulness, maintaining fairly calm sleep patterns, which were induced with and managed by a variety of sedatives and muscle relaxants. In general, he appears to be in little pain, although the only signs of discomfort we have to watch for include some muscle tightness/rigidity and seemingly spontaneous full-body perspiration. We continue to keep vigil beside him, rearranging his pillows and re-positioning him in the same bed he's laid in since Dec 1st (!). We massage his now-teeny muscles, clean out his ears, nose and mouth, and do anything we can to keep him (at least appearing) comfortable.
But the time came--the day I desperately dreaded--when we had to ask his medical team to take out his feeding tube. He is no longer processing his liquid "food" well: he's begun producing excess mucus, urinating less, sounding more congested, and overall shutting down on us -- on life. With much deliberation, counsel and prayer, we became very aware that we had reached a critical point where if the feeding continued, it could become more detrimental to him than helpful. He could aspirate the food and excess mucus into his lungs, which would then likely lead to pneumonia...a bothersome way to die. He's also begun to develop bedsores from sitting fairly upright -- a position necessary with tube feeding. So, as of yesterday afternoon, he's no longer receiving any nutrients. For now, he'll continue to receive his meds through the tube that leads into his nose, as he doesn't seem too bothered by the thin tube leading to his stomach. His picc line fell out last week, and when the nurses attempted to install an IV in it's place, his body rejected the needles: apparently noted signs that his body is ready to enter it's final rest. So, unless we want to stick meds up his, uh, rear-end, the nose is a pretty good way to manage his pain. He's able to lay on his back now, which he seems to really enjoy.
It's so hard not to feel like we're "giving up" on him, and yet I firmly trust that God is not giving up on him (or us). We're simply letting Patrick go, following his body's organic cues, allowing him to tell us when he's ready to pass from this life to the next. At this point, we just continue to watch and wait. We've been told that his 34 year old body will eventually shut down (somehow), and that it will likely happen in the next two weeks. My prayer now is that he'll pass peacefully, that he won't feel any pain in the process, and that he'll sense our love for him in his last days with us.
Cecilia is back from Boston, and it's so wonderful to have her home with me, if for nothing else to remind me that there is much life left to live. And yet, I'm realizing what my life will look like as a single parent, being the only one there to respond to her cries at night, or her tantrums in the late afternoon. It's completely overwhelming to think about having to make all of the parenting decisions by myself. I hope and pray that God will grant me the strength, wisdom, and courage to meet each day with some sense of renewed grace (and energy!).
Thank you for your continual prayers, support and notes of encouragement (yes, I do read them!). Someday I will get around to thanking you for all of your help, gifts and love....but for now here's a big THANK YOU to each of you. I know full well that I couldn't be getting through this "valley of the shadow of death" without you.
Blessings to all of you this day.