Vent Frustrations

This afternoon has been low key. I received a call from Kam at school around 11 and she was having a panic/anxiety attack.  I'm sure the many peers and teachers asking how things are going and replaying the scenario out over and over again took a toll on her.  Bless her heart.  She is such a caring big Sis.  Carson picked her up from school and brought her to the hospital to see her brother.  It was just what the doctor ordered.  She read books to Owen, talked to him and rubbed his head.

Daddy and Logan took a little snooze and I got plenty of snuggle time in too.  It's such a hard balance trying to divide time between all the kids and making sure they are all getting their needs met.  On top of that, we are juggling everyday stuff and trying to take care of ourselves. I think we are figuring it all out and doing a decent job. :)

Owen has had a tough time emotionally today.  The biggest frustration is being wide awake, having a breathing tube down his throat, and pretty much immobile.  He is trying to talk and we are playing 20 questions trying to figure out what he wants.  He gets so frustrated that we cannot hear him and tears start to flow.  He says the tube feels like his teeth are falling out or that it's hard to breathe on his own.  It's heartbreaking!!  We have been using small doses of Ativan to help him rest and relax.  He only had two doses today but it really, really helped. 

We have read tons of books today.  I have his iPad set up with Netflix movies so he can watch those from his bed. We can't play with any toys and he can't play iPad because his hands are covered in IVs.  I know on top of everything he feels crummy due to the steroids, fentanyl, dex, milrinone, epi, heparin... and he is also getting his transplant meds on top of it.  I can't even begin to imagine what he is feeling.  He is tougher than I could ever be and is such a trooper!

We just had evening rounds and everyone keeps mentioning decannulation for tomorrow.  I am completely skeptical, but they have pushed back the surgeon's schedule to accommodate Owen in the AM.  Keep praying.  Tomorrow could be a HUGE day for him.  It could also just be a trial and error.  We are off to bed soon.  He has two nurses bedside all to himself so it's easy to stay up late having conversations.  :)