More of an update from today

Kyle's day started really early the nurse woke him and Mark up at 5 so that by the time they did Kyle's EEG he would be sleepy. The tech came at 9:15 and I have to say I was nervous with Kyle you never know how he's going ot handle a situation...after the tech places all 28 leads on his head he then had to fall asleep...which was pretty funny...he did it in about 5 minutes...Poor guy they made me wake him up after 10 minutes so they could complete the test by shining a bright light in his eyes....he cried and cried he was so tired. As soon as that was done the transport came to take Kyle down to MRI...this is where my blood starts to boil....they took us down at 11:15, they didn't put Kyle under until 12:30....by 12 he was nervous and down right scared...we kept telling im he was getting pictures taken of his brain and his belly and that he would take a little a nap for it...this poor kid...knows to much, as soon as the drugs hit his veins his whole body tensed and he tried to cry out to us...horrible. I swear this gets harder and harder every time. Before he went under we explained to the anesthesiologist that Kyle has a diagnosed case of re immersion delirium...it can be pretty severe and scary for all of us. There are certain meds that make this a much better and safer wake up for him...it's all over his chart plus we talked to him about it so I felt safe that Kyle would be ok. 3 hours later our baby was screaming from the recovery room, as Mark and I came thru the doors I ask the dr did you give him what he needs and he said NO, he's fine and left...like left never came back.....
we asked to be brought back upstairs and had to sit with Kyle who screamed and was petrified for almost 2 hours...all because a DR couldn't take 5 minutes to help our little guy..That has never happened to us here...never....I can tell you this it will never happen again. His nurses up here on the floor went above and beyond to help Kyle thru this but it should NEVER have happened.
Mark and I work very hard so that Kyle never feels like he's a number....a name to cross off at the end of the day...he's a sweet, beautiful, intelligent 5 year old little boy who should be treated with care and compassion...my heart aches still....I can't tell you all how horrible it was to watch this....

We meet with the dr's at 9 am...
I will update after
xoxo
K