Friday, June 15, 2012
It's my night to be home w/Ty & Noah. I've played w/them & loved on them, but they are now fast asleep--as I should be!!! How in the world can I sleep knowing how much pain Ryder is in still??? A Urologist came to see him today. It seems like he has a spastic,neurogenic bladder-which is very painful. I've finally convinced the doctors this isn't just a constipation issue after calling them in to watch his pain, video's of these episodes and having a break down asking them to look into the cause of his pain last night...I don't remember the last day he hasn't thrown up & I can't recall the last time he hasn't cried and rolled around in pain from trying to poop! The hospital environment has been heartbreaking. I can't imagine not being Ry's advocate and trying to help him in every way. However, their are many kids there alone w/no one to stay w/them or tell the doctors what is abnormal or which route to take in their care. The doctors do what they can w/the info they have, but in reality--it's not based on much. They see us less than 10 minutes a day. They rely on nursing/ nursing aide notes, which very often are not a true representation (not at all blaming them-but have made corrections several times a day-what about the kids w/out educated parents to help?) I've had to correct the aides to measure G-tube output seperate from urine output. I've had to tell doctors that Ryder hasn't had a 24 hour period w/out throwing up for months, because they see him happy and think he is doing well & don't seem to be looking at his past history or the big picture. Reality kinda stinks lately!!!!