So after yesterday excitement.....I figured I would have the night nurse print off another med sheet. Thinking that all my ranting and raving yesterday would have sparked an interest in them to do their jobs. Well once again................I was wrong. I'm emotionally and physically drained with this place. The lack of respect and cares is exhausting!! And they wonder why I don't feel SAFE to leave Danny alone in this room! I found his med sheet to still be missing meds. One of them being his Prevacid (Danny's antacid), where do they think it's ok to just removed meds? And ones that have significant results if not given! Lets see here...we are starting him back up on feeds (which he isn't doing to hot on), he is having tummy & gut issues, but no one else sees a problem with him not getting his Prevacid that he's been on, um ................. since Birth!! Seriously, where did they get their degrees here a cracker jack box? I am getting so sick of babysitting them here....and then they want to preach to me about getting nursing at home, when it's VERY evident that my level or standard of care FAR exceeds what he is given here and we are in an ICU people!! If they would like to pay for my "cheap" stay here and put my family up in a hotel so we can be together while they figure out how to become doctors...then maybe this would be ok? NOT!! How in he hell are we going to know what's wrong with him when they can't even keep his normal routine going? We HAVE to have him back to his routine before we can figure out to add or change something, right? Why am I the only one here that understands that.....AM I really dealing with Doctors here? Did they study?
It's now almost 6am and I've been up with lil man since 2:45.....so I'm sure all this stems from sleep deprivation, but am I that far off? Would this be tolerated if this was their child here? Am I over exaggerating? Danny got up at 2:45 and I changed his butt, suctioned him, vented him, repositioned him, rocked the bed and at about 5 he feel back asleep. PHEW! For the nurse to come by 20 minutes and slam the door shut, HOLY CRAP I just about came unglued. He now up for good! This ALL is too much to deal with. In the scheme of things...I was scared to death of a pick line n trache, but reality is out of all this they are a cake walk. Do I have a standard of care that is unobtainable? My lil man deserves better then what's been going on around here. I am going to be paging the hospital Patient Relations first thing this morning. I obviously am NOT getting anywhere being bitchy on the floor...well maybe that is why they are dicking up his routine (ok that is reaching, but I'm on a roll here). I am going to see what we NEED to do for my lil man and get him out of here and to possibly be transported back to Fox Valley to finish his recovery up there. Better care, more respect, more educated staff and closer to home. There are a hand full of nurses here that are awesome and have helped my lil man out so much...maybe they need to train the rest of them, LOL. Cause it's becoming so counter productive. I'm DONE with this place!! If Danny is too complicated for them I wish they would tell me instead of this.
To recap the 3.5 weeks here ~ don't have the time or effort to recap the lil things but......
1. Found Danny hunched over in bed with his face in the railings, bipap in his eyes crying when I came back from a 10-15min shower.
2. Nurse used a suction tip I specifically told her not too and ended up with lil man bitting down and his front tooth coming either when he bit down or pulled out again when I left to go get lunch. LOST first tooth out forever
3. Trache - woohoo, it's all good....ok NEVER thought I would be saying that, EVER! :) but they ended up having to pull out the other front tooth and I now have a second "first" tooth for my book
4. Big Seizure med Keppra, Prevacid, and 3 lil meds....were overlooked somewhere and he didn't get them for 5-6 days. WTF?
5. Some how the right hip that was just put surgically back in is now subluxed once again
6. The stent put in during the failed attempt to get the kidney stone out, is migrating down in the bladder. So will now have to be redone? Not sure as the doctor is on vacation this week and the others in his place don't want to play nice
7. Right ear tube that was put in when the trache was done had to be cleaned out and reinserted do to bloody discharge.
8. Danny got VRE
9. One very upset and pissed off Mommy!
She's volunteering for her brother's program. Squee!
12 hours ago