*update* after typing all this out, Adam just called me to tell me her fever is back up to 39c. Right now they are just treating with Tylenol, I don't know what they plan to do.
I'm really growing tired of the CDH dance. Everytime I start to think we have this going in the right direction, every time I feel like maybe, just maybe I can handle this and we are going to be ok, we regress.
After a week of fevers and fussiness, and culturing everything everyday with nothing growing, it was decided that it just had to be a process of elimination. The first and easiest (though it actually wasnt) to eliminate was the broviac line and the picc line. As her surgeon said "her lines are like gold" they worked very well for delivering all meds she needed, drawing blood and blood gasses and giving her transfusions when she needed them whichis typically at least twice a week. So now she has a line that goes in through her groin that does not have as much acess as she had had before so she also will need to have a regular IV started each time she needs blood since hers falls out typically after about a day or less depending on where it is and how active she is. She moved her hand around so much while getting blood through an IV in her hand today that we thoguht it came out because blood started going everywhere, but she had just loosened where the line went in. The risk of the new line is that she could develop a blood clot in her leg, which of course she did. It seems like everytime we are told "this could happen" it does. Her leg also turned blue as soon as he started to put the line in, which he said he kind of expected. With some heat and elevation her leg went back to normal. She has not had a fever since the lines were taken out and her white cell count did start going down. It was very high before which is also an indicator that her body was fighting an infection. So they are thinking it must have been one of the lines, and hopefully we dont have to worry about infection again.
The bad news about all of yesterdays activities is that her body did not tolerate so much going on. Her blood gas immediately after was horrible and they immediately went up on her vent settings and Nitric. She was almost off Nitric and her vent settings were suitable for extubating and she was doing well breathing on her own and over the vent, they had anticipated the Nitric would be off tomorrow and then she would have an MRI and then they would Extubate by Friday. Now her vent has been turned up to where she was weeks ago and her Nitric is back up to 10ppm, they tried a sprint and she did nothing, no breathing on her own at all. Her Slidenafil is not working anymore and she is shunting again and desatting when she is upset, which means that her pphn is no longer controlled. Needless to say she will not be extubated any time soon. She also has a blockage in her intestine so no feeds anytime soon either. They also increased her Morphine and Ativan drips to 250.
Im so tired of setback after setback after setback. I was really hoping to not spend 6 months there, but at the rate we are going it's quite possible. At almost 2 months I would have really hoped she was weaning sedation instead of going up on it, that she would working on feeding in some way instead of still only getting TPN and lipids, which also her triglycerides were up so they are only giving lipids intermitently so she is not recieving optimal nutrition. I would have hoped we could be holdinlg her and she wouldnt have any chest tubes and that she wouldnt be intubated. I feel absolutely terrible for her, she is miserable unless she is heavily sedated.