progression

Eve has continued to progress.  She had another vomiting episode on Wednesday.  She had a hospital bed delivered yesterday so we can raise and lower her upper body.  We're changing around her meds and j-tube feeding rate to try to keep her comfortable.  They are also ordering a pain pump, so she is always connected to a source of pain relief at the push of a button (in case I can't leave her side).  Yesterday, the hospice nurse informed me that we may have just days or weeks left with her.  She said that children can hold up for so long, but often have an extremely rapid decline at the end.  I think it's going to be sooner rather than later.  She had extreme pain this morning when I moved her from her bed to her chair.  I couldn't get all of her meds in her g-tube, so we paused the feeds to give her gut a break.  We're going to try again with the meds in a little bit.  The hospice nurse is going to consult with the medical director.  When I got off the phone, I checked on Eve and she had fallen asleep in her chair.  She usually doesn't take naps this early. 

We are so lucky to have such wonderfully supportive family, friends, and neighbors.  I know that you would love to help.  I promise ask for help if we need it.  If you email me and I don't reply, know that I am grateful for your support and that I read it, but I might not have the energy to respond.  I'll do my best to keep updating.  In the meantime, if you are one who prays, please pray for a quick, quiet, and comfortable death.  If you are not one who prays, please send good vibes to help us achieve that goal.