Friday - We're down to days with our girl

This morning we had a home visit from the hospice team (dr, nurse, social worker, resident dr).  Home visits are awesome.  Hospice is awesome.  

The doctor confirmed what we had suspected.  Cicily's new symptoms are not just bad days they are end of days.  After examining Cicily and hearing our report of the past week, she gave us the news.  The food and water (TPN) Cicily has been getting through her IV is not being used by her body.  It's seeping out of her veins and into her stomach, lungs, abdomen, etc.  Essentially, continuing to feed her is doing more harm than good.  We could choose to continue her food or stop it, but the result would be the same.  Her body has been amazing.  Doing so well with its incredible limitations.  Her spirit is even more amazing.  But, her body is just done.  It can't function well enough to keep her spirit living in it much longer.  So, Chris and I made the awful and heartwrenching; but also simple and peaceful decision to disconnect Cicily's TPN this morning.  The dr said she could be with us for a few more hours, days or weeks.  Our best feeling is we have a day to three more with our girl. 

 So Daddy and Mom snuggled and cried and talked with Cis about what was going on.  We asked her if she was ok with stopping the TPN.  She couldn't bring herself to say yes or no.  That's ok.  Even the most wise 10 year olds need parents to make the tough choices.

 Then we brought Maya and Sophie (They had been playing Legos together in Maya's room.  I hope this nice togetherness will last after Cis goes.  They'll need each other.) in to tell them the news.  We had some lovely family time.  Crying, talking about how much we'll miss Cicily, hugging, talking about what Cicily will be doing in the spirit world, and making fart jokes.

 Then visitors came, and more visitors, and more and more.  Cicily LOVED it.  Except at the end she got exhausted and still loved everyone coming, but with less smiles.  This is Maya's bestie since they were 2 playing Maya's ukulele with Cis.

 And while cousins were here, a chicken got plopped on Cicily's lap by Sophie.  (I think she was shocked when I told her she could do it.)  

 Then we had a little more family time.  A spontaneous Small World dance and song was performed and enjoyed.  

And in the midst of it all, I learned how to give IV morphine.  Now Cicily's on a morphine drip, with doses of lorazepam (anti-anxiety, end of life med).  Hopefully she can be comfortable but still conscious enough to enjoy her last couple days on this earth.