November 17: conventional ventilator

Noon: 

quick notes basically for me. 

Klebsiella bacteria was cultured from the stomach wound. The 3 antibiotics that she has been on are not good coverage for this one. All others are stopped and ceftriaxone/rocefin will be started today. This is not likely what caused the whole event. Rocefin will also help cover any pneumonia that may have occured.

She will probably be switched to a conventional ventillator today. 

Respiratory therapy retaped her tube so she  is paralyzed right now. Hopefully we can get the echocardiogram while she is still paralyzed. That would be ideal. She doesn't have those choreiform movements when she is paralyzed, obviously, so procedures are much easier. 

Right now she is off the epinephrine and off the vasopressin and later today will be taken off the octreotide. As long as she can stay off of these and be weaned on the conventional vent we may be able to try feeding the gut in a few days. If the gut works, then she could have UV lights to help clear up the jaundice...and then excrete the waste through the gut and colostomy. The resident said that the bilirubin is so high at this point that this is really the only way we'll be able to get rid of it.

The liver enzymes were about the same today. The GI docs said that it was encouraging that her albumin was in a normal range because the liver makes albumin- so something is working in there. 

They are going to try giving some vitamin K to see if they can stimulate her body to make clotting factors.

The fentanyl sedation has been weaned. The nurse started presidex last night and stopped it again. Her blood pressure is on the low side. They think they may have taken off a little too much fluid and dehydrated her a little. So today they won't draw off any fluid. 

They took the NEERS reading off today. This, supposidely measures the amount of oxygen the brain is using. The numbers were all over the place, but her oxygenation has been good, and we hadn't been doing anything with respect to the readings anyway, so it was taken off and is one less cord to deal with. 

Evening: Ava was switched to a conventional ventilator. It was an easy exchange. After being on it for a few hours they were already able to wean the settings again. This is good for her right heart function that is trying to pump blood to the lungs against ventilator pressure.  Ava seems more comfortable with this ventilator. She can throw in her own breaths any time she wants and isn't fighting against ventilator pressure like on the old one. 

They did another cardiac echo this afternoon. They looked at pressures in the right heart. They were about half of what they were on the 11th but still 3 times higher than normal indicating the pulmonary hypertension. They said her right heart function was not as good as the left, but not bad. Since it was the weekend the cardiology fellow came and did the echo, which was nice because I could talk to her about it, whereas the techs aren't allowed to make inferences. 

So the lungs and heart seem to be on board with recovery. Now we need the liver, intestines, and kidneys to wake up. These are make it or break it organs. 

On other fronts: The boys came to slc with severe diarrhea...passed it on to Shaun and I. Shaun had the added pleasure of puking last night too. (TMI? too bad) As a result I don't touch Ava or get in her face. Not the plesant weekend I was hoping for. The boys are having a hard time. William in particular says he misses his whole family and wants to sleep at his own house. He just cried and cried when they left today. Made me sad :(

Erin Reed drug me out of the house tonight. She treated me to the paint mixer where we made the copycat painting and had a glass of wine. Then we went to sushi....then back to the hospital to see Ava on the conventioinal vent. It was an excellent night (for us...Poor vicky was miserable with screaming Ivy)