Day 302

Ava's gasses came down to 35 and 32. Her white blood cell count went down to 10. Her O2 is back down to 25% and all of her other vent settings are the same except for her breath per minute rate was 30, then went down to 25, just because she is still paralyzed and doesn't breath on her own. I tried to get her off the paralytic yesterday and that didn't work. I tried to the point of crying. I really feel there is some missing info through this whole thing and I know the doctor who was on-call the night this happened, was scared for Ava and didn't exactly know how to treat her, otherwise he would have taken the paralytic and sedation off that night. Her ears are clear as well.

They are going to take advantage of her being paralyzed and check out her trachea and lungs tomorrow. They are also going to have a CAT scan to find out what happens when the peep of the vent is off her lungs and see what happens - if the lungs collapse or not.

They said that missing two doses of steroids probably wouldn't have caused this. Her blood pressure didn't change which is one sign of missing a dose. The only thing variable is Ava, and you can never understand exactly why her body reacts to things. It's kind of ironic that the staff basically blows off Ava not getting her two doses, when if we forgot to give her the doses we would probably be considered bad, negletful parents. If a nurse was in our home and forgot to give her TWO doses and not realize she was even on steroids, we would probably want the nurse to be let go because, after all, that IS her job.

I also had another discussion with a staff member about Ava's growth and she insisted that Ava had grown on her 20 ml of food that we had decreased to. She feels that Ava has a growth problem which I completely disagree with. Look where Ava came from - 1 lb 2 oz. - Sister's Hospital had no problem fattening her up.  I told the staff member at least 3 times, that Ava did not grow on 20 ml and that is why she hasn't grown in a couple of weeks. I looked up when she went down to 20 ml of food, and when that happened Ava weighed 6.2 kg. Soon after, Ava got sick and she ballooned up to 6.48 because of retaining fluid which is typical when she gets sick. After she got better, her weight went down to 6.18 kg and then 6.16 the week after that. That shows she never had a true weight gain on the 20 ml as the staff member said she had. What bothers me, is that she would not listen to me and after I repeated it 3 times, she finally said we could look it up. I feel like my knowledge of Ava is viewed as inaccurate and that I am ignorant to Ava's history. These stats are numbers I memorize without any effort and live by.

Ava did have an increase of weight due to the increase of 24 ml of food. She now weighs 6.04 kg = 13.32 pounds.

Thanking God for Ava's stats to be back to normal and praying for strength and knowledge...