Wednesday, July 1, 2009

July 1st ~ WOW!

Trying to "UP" ourselves out of here, LOLBright Eyed, but not so bushy tailedOk seriously where did June go? This illness started on June 11 and we are no further today then we were then.....unfortunately worse off in some situations. Whatever bug that Danny got to start the spiral downward effect had impacted his lil body with serious consequences. And the ongoing question of when are we going home....time will tell and Danny is the boss. My gut says at least another week for the soonest and if he should need a trach then Lord knows when we break out of here. We have to more tests ~ another MRI and a sleep study that we need to do with lil man and they will give us our definitive answers of trach or no trach, as I'm not going to make that call till we know for sure. This new illness kicked his butt, and triggered alot of issues with lil man.
We stopped all feeds once again, as his diarrhea isn't getting any better and he is still wretchy. It's been going on for about 14 days now and that's not good. He isn't processing his meds well either so they are considering trying to convert what they can to IV instead of oral and/or putting in a GJ tube (feeding tube that bypasses the stomach and goes into the intestines) till his stomach is better. The doctor says it's like his stomach is paralyzed and isn't doing it's job. So no food for awhile once again.
He really has a hard time recovering from all of the respiratory treatments. He gets so stressed out and pissed off that he collapses his airway more and then we see the "seizure like" activity do to irritation and aggravation. So it's a check 20 here damned if you do and damned if you don't Again he needs more bipap time, but is still tolerating an hour here and there being off it. Which is a PLUS. Got to look at the pluses too :) We are still waiting for ENT to stop by and look at him. With the hope they have some tricks up their sleeves to dodge the trach, keep your fingers crossed.
The Care of Plan for Danny is in play and submitted to see what he qualifies for Private Duty at home nursing. Of course if we go home on a trach that changes the game significantly! But for right now we are processing everything as if he will be going home with normal Danny activity, LOL. Now the hardest part.....................finding a Nurse!
Danny started inpatient PT yesterday and seemed to tolerate that well. They are going to work on him 3x a week. YAY ~ Keep him loose! Now that we are not in isolation they are going to put Danny on the Pet therapy list so when there is one on the floor he can have 4 legged visitors stop by.
He is out like a light right now. It's been a VERY busy morning. The xray people came in a 4:30am, ARE YOU KIDDING ME (second morning in a row)~ and he's been up ever since. Then RT came in for breathing & vest treatment treatment, he wretched his morning meds, filled his pants, I gave him a bath, changed his now is a good time for a nap. I might take advantage of the down time myself.
Sorry I didn't up date yesterday but had some visitors and then was just wiped out! My mom and aunt stopped by in the afternoon and then my girlfriend stopped by in the evening. It was so nice to see fresh new faces :)

1 comment:

Anonymous said...

I'm very sorry you're having such a rough time.
You hang in there Danny!