Our cute little girl participated in her Christmas concert this afternoon!!!!... She looked soooo adorable. She was up on stage with her nurse Sharon and all the other kids singing....well she wasn't singing but she was bopping her little head to the music.....in the final part of the concert she was sitting in her wheelchair at the bottom of the stage smiling one HUGE smile as the kids sang....too cute!!!
Kaden is good today. I was there early cause I had to leave for the concert at noon. He was happy, smiling and having a little physiotherapy session when I got there. He is just to cute. Anyone who has never met and spent time with him is sure missing out. (Elle too) He got his IV out today. That makes it easier to handle him. I am always afraid I am going to pull it out. We are heading there tonight.
We have our big 'discharge' meeting tomorrow at 4:30......in the words of Paul......"it could be short or it could be long".....depending on how difficult they are going to be.....we want to have our children home and have the equipment that WE are comfortable with not what they think we should be comfortable with. I always find it funny how 'others' think they can just come in and tell us what we should be comfortable with.....its not a game its two precious lives.....they forget about the human side....all we want is to be supplied with the necessary stuff to ensure that we are all safe. Why is it that families with medically fragile children have to fight for everything.....ALL THE TIME!!!!!!! WHY???? Don't ya think we wanted 'normal' children just like everyone else??? Ones that walk, talk, eat by their mouth......that can say "I love you mommy or daddy".......Just doesn't seem right that we want to take them home and all we need is some oxygen and a Laerdal bag and its a big deal.......If you do the calculations it costs at least $1,200 dollars a day to keep one child in hospital.......(ICU is way more)......now multiply that by 356 days........way cheaper to give us those two pieces of equipment and send us on our way.....anyways tomorrow shall be one interesting day for us all.......we are hoping that Kaden comes home this week.
P.S. Anyone know of some good nurses that are looking for some extra hours????
3 comments:
Good luck with the meeting you two......they better be ready for strong articulate advocates to meet them head on.
I have a nurse connection, she is smart and friendly, she is kinda cute and loves kids a lot :) Let me know if you want to meet her....I know her very well.
Who are you??? You forgot to tell me your name......
Good luck with the meeting Candace. We just finished our own little fight for higher doses of Midazolam the other day.
Love the photo of Elle and the visual of Elle at the concert.
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