Today, well the past few days have been long, exhausting days. Honestly, I can't believe that I'm still awake right now but I am...trying to catch up on emails..but alas, I've given up for the night, with 78o still unread. wow. and I have to say all those pictures of your CF warriors are simply warming my heart, you have NO IDEA how humbeled I am that you all have responded and have put your trust in me in creating this. I have barely begun and already it brings me to tears. I think it's going to be very powerful indeed. And as soon as I get it all together, I will post it on here and my facebook so you all can have it for yourselves as well...simply a moving tribute to our little angels...
My husband and I met up with the Bridges organization here at the hospital, and they are phenomonal. It's an amazing team who pulls together all kinds of resources and hospice transistioning together. We learned alot today. And the thing I learned the most I believe is I simply can't believe others have gone thru this. My heart breaks for each and every person sending a loved one into hospice or even considering it. Over and over in my mind I kept thinking I wish this was easier, I wish it wasn't such a huge question mark you know? So many tiny details that I never would've thought of. Yet it wasn't overwhelming with information, it was very compassionate and very supportive discussions. I realized today just how much I'm attached to our CF team here. They are family to me. I've been working hand and hand with them constantly over the last seven years and the thought of saying goodbye to them and handing our sons care over to an unknown totally frightens me. So I think I can safely say that we're not going to. The bridges team is going to call our local peds hospice team and do some footwork for us, about what is considered extreme measures verses comfort measures to them, and to just get us information about them so we can decide if we even chose to meet with them. We dont have alot of time to waste on a ton of meetings, lifes too precious for that. So I appreciate all the bridges team will be working thru on our behalfs. They've been able to custom tailer hospice care before to fit a families needs to stay contacted with the CF team and also have hospice at home...and at anytime could still receive care at a hospital if something acute happened. It's all such a buraucracy, and insurance I'm sure makes you jump thru hoops, but I think we'll know what's best for us and for Conner before long.
We also discussed in depth with a child psychologist Conners developmental understandings of death and dyeing, and he gave me a book and some papers to read that will help us to know what hes thinking, feeling and ready to hear, which will be a huge relief. that is my biggest concern. saying too much and it scaring him, or not saying enough and having him feel like he's doing something to let me down. a very fine balance. and as i said before its all so very complex and i wish so much that it wasn't such a huge question mark for us, i wish it was easier. life though, right?
i was proud tonight of conner man, we got the bipap back in his room, he's been terrified of it and who can blame the boy? but tonight he put it on, with the power on for the very first time and left it on for 15 seconds!!!!!!!!!!!!! i was so proud of him...i think bipap could really help him sleep a more restful sleep at night and give him more energy during the day. baby steps....
it is late, and i should go to sleep, I will leave you with a great pic i got of conner tonight, his buddy got him night vision glasses for his bday last week and my hubby brought them to conner today and so he was wearing them tonight and the nurses LOVED it, not to mention he thought it was pretty cool himself...so i'll post it for your enjoyment.
thank you for the continued love and prayers...i feel them. for the most part i'm getting thru each day, and actually eating meals which i can't believe that i am able to...the only time i get "iffy" is when i sit down and discuss conners declining health, then my stomach starts to flip. but i know that because of your love and support i'm actually able to function like a human! and i owe you the world...
goodnight my newest and greatest friends....lots of love to you
