What's Happening Now

Originally Posted October 6, 2022

I'm going to share some details about our week because I know how important the stories of other families have been in preparing me for this journey.  Dying is a natural process, but in the same way that the natural experience of birth has some painful and anxious moments, so does the experience of dying.

Jacob was quiet and comfortable all weekend after we stopped filling his tummy -- it was causing him a great deal of pain.  Because he has a g-tube, we were able to continue giving him all his regular medications for seizures and muscle spasms and nerve pain until Monday night.  This is when I realized that his stomach was no longer emptying and even the very small amounts of liquid we were using to push his meds had collected and came rushing back out.  We could no longer use this route to keep him comfortable, but we could still give liquid morphine and lorazepam under his tongue and in his cheek.  Unfortunately Hospice really got behind the curve of his neurological pain and agitation and we have been playing catch up ever since.  The true horrors of his neurological injury have been unmasked now that the medicines used to control it his whole life are no longer an option.  Jacob's whole body is in spasm, his arms drawn up by his head, his legs and torso painfully stiff.  He is having seizures although he doesn't seem to really be aware of them.  He does occasionally cry out so we know he is struggling with pain and it has been difficult to endure.  This morning the doctors decided he wasn't absorbing the meds in his mouth anymore and we should administer them rectally.  This has been working much better and he has been quiet today as he slowly slips further away.  His little heart and lungs are so strong and working so hard to keep going.  Children can go a long time because they haven't put a lifetime of wear and tear on their parts yet!  We are encouraging him to relax and let go, but Jacob has always been his own stubborn little person and he's going to do this his way.

Pray for comfort, pray for release, pray for rest.  There is nothing left here for him but suffering.  It's time to go home.