Day 380

Ava had a good night and she slept most of it until she pooped and then she got washed up. During the day, it was another matter. She was not happy at all and had numerous desats. I guess the Respiratory Therapist who is a manager, decided to put her Peep (Positive End Expiratory Pressure) up to 12 to see how she would do without consulting Lung Center. They thought she did better but they must have went back down to a Peep of 10. I heard about this later tonight when I came in. Around 3:30 she needed to go up in her O2 because she was satting in the 80s so they went up to 4 liters which is around 60%. I think this might have coincided with the time they were changing the peep and in a minute, I'll tell ya why. When I got there tonight, Ava was pretty hysterical and satting in the high 70s and low 80s and we couldn't tell if her pulsox was even working because Ava looked pink as can be. I eventually thought about changing the trach, which we did and there wasn't anything clogging the trach but Ava still looked to be having a hard time breathing. I went over to her vent and made sure all of the vent tubing was on and wasn't leaking and that's when I noticed her peep was hovering at 8 and maybe go up to 9. With all the days we have been at Ava's bedside, I don't ever see her peep hover at 8. With each breath on the home vent, it changes different stats and I usually see it move between a peep of 9 or 10. Ava's nurse and a transport nurse was right there and I moved the peep knob (which we have been trained on to do multiple times and we will be doing at home) a few turns to a peep of 10. You could immediately see a difference with Ava and her sats started going up to low 90s and her breath rate went from 60s to 70s down to 40s and 50s.

I had the fellow that is on, call for a Lung Center doctor before deciding to put Ava back on the home vent. He was on the phone with a Lung Center doctor and I was hoping it was Ava's primary Lung Center doctor. When the fellow came over, I told him quickly while he was on the phone about the peep change and he told the Lung Center doctor. The Lung Center doctor promptly told him to not have Ava's mother change the peep or touch any vent settings and he was very irate with the PICU staff for letting me do so. I found out afterwards, it was not Ava's primary. I do believe this doctor did not understand that Ava was not on the correct peep, and he thought I was just changing vent settings. I am disappointed that a doctor that cares for my child and who knows that we are getting ready to take Ava home in a little over a week as well as had numerous training lessons on the vent, would assume that I would "mess" with the vent. I was the only one troubleshooting. The Lung Center doctor wanted to put Ava back on the conventional vent since we can't make any changes on the home vent. But thankfully, we didn't have to move off the home vent, since her sats were in the 90s and her breath rates were in the 40s and 50s and her heart rate was in the 130s when she was sleeping, 150s when awake.

Her white blood cell count was 17.5 up from 12 but that can happen because she is getting a stress dose of steroids. I will know tomorrow if she is going to get any antibiotics. She is now getting her immunoglobins transfused. I was also there to help Ava get her IV and she did really well when they were putting it in. I sang to her and played Sesame Street and she cried only a little bit. Hopefully her immune system will get quite a boost and she can fight off whatever she has and be back on her way home to us.

Ava weighs 7.98 kg = 17.59 pounds

Thanking God for helping me care for my daughter, and praying that Ava can fight off whatever is going on and stay off the conventional vent and get home...