monday 9/2/2013

Ava has a UTI (urinary tract infection). She is on zosyn antibiotics. It was through the IV, but she's blown through 3 IVs in 3 days so today they switched it to an oral dose. It is apparent that the ampicillin antibiotic prophylaxis isn't preventing UTIs so they are going to pick a sulfa drug antibiotic when the zosyn course is done and she will take this for the next year or two until her reconstruction is done. She is finally old enough for sulfa drugs. Ava hasn't really grown in the last month. They keep her feeds very restrictive to minimize the fluid in the blood so that heart has less to pump. They have been using a diuretic, lasix, which makes her pee, to keep her a little dehydrated. This helps keep the blood volume down and also helps to draw fluid off the lungs. The problem right now is that Ava seems to be dependent on the lasix to pee at all. She pees after those two doses, but her diaper is dry the rest of the day. I will dig into this issue more tomorrow. She is down to 3L of high flow and is still on the 80% oxygen to dilate the vessels in the lungs. She is also still on the inhaled nitric oxide. The last 4 times I have been in to see her she has been sleeping..HARD. I hope to catch her awake tomorrow to play with her and so she knows I'm there.   Another day nurse added herself as a primary for Ava, which we were very thankful for. It will help bridge the gaps when the other two primary nurses are off schedule or on vacation. We felt this infection would have been caught much sooner if she had a primary nurse who knew her. Her heart incision looks great. That is more than I can say for the sore on her arm resulting from an IV infiltration down in the cardiac ICU. That is where blood and fluid leaks into the surrounding tissue causing damage until you pull out the IV.  I think she will have a big round scar there.