Finally after over a year I have a computer and A LOT has happened...
As you know, the last time I updated was just after we thought we were going to lose Carsyn. I fought with Doctors almost that whole 13 day stay, because they think parents are idiots that don't know their children.
That was me being NICE.
Three days before Caryn was released they still weren't giving him medication through his G-tube.. and if you didn't already know this, Prevacid doesn't have an IV form... So he wasn't getting reflux medications AT ALL...
All night the tenth night Carsyn was chewing on his tube (they decided to stop the morphine so he woke up to this tube down his throat) and gagging all night.. After about 3 hours of the nurse ignoring his alarms because he would desat every time he gagged I got fed up. I went out, at 3 in the morning SCREAMING at the doctors and nurses for ignoring Carsyn and pretending that he wasn't having a hard time in his room.. They started him on his prevacid and gave him some ativan to calm him down.
The next morning I told them the breathing tube was coming out that day.
They took the tube out, after a lot of complaining that I should just let them handle it and "relax" and that they'll just have to put it back in..Guess what? He was breathing on his own, in fact so well that even the doctors were stunned..
All he wanted was that tube out.. That's it, he'd has enough.. his reflux was so bad with that tube down his throat that he couldn't swallow it back down.
I pushed to get him out. Got GI to sign off on us going home. (they tried to fight it and make us wait in the hospital for his G-J tube to be put in) but since we had an appointment made, they couldn't hold us. THEN they tried the
"well he needs to have this many mls an hour in order for you to go home"
So every half hour I was giving him fluids to get him home. I made sure he got well over what they wanted him to get so they couldn't fight me on taking my son home. Every day he spent there was another day he could catch something. There are too many illnesses in a hospital for him to spend too much time there.
He got to go home and he was smiling as we left..
So a big EFF YOU to the doctors who fought me and ignored the fact that i actually know what Carsyn wants. I hope the next parent rips you a new one.
We are still looking for funding with the van (we did get one but it's not converted as they cost too much already converted and we didn't have enough) and Caryn's medical marijuana is still close to 700 dollars a month and I'm working two jobs and still need the help..
So if you can please consider donating.. I'll be able to update more frequently now that I finally have a computer in my house. I'll do another post about his medical marijuana, thats going to be a pretty long post itself...
so here the link and thank you so much to those who have donated <3
Carsyn's gofundme
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