>> Friday, November 5, 2010
Here is the latest from Jennifer. Ava still has a VERY long road ahead of her. Her body is so very fragile, and needs rest and lots of prayer. Please pray for her.
Ava continues to have fairly stable days and nights. She's got a few numbers they are working on with different medications and ecmo flows to try to stabilize. Over the past few days her chest x-rays have shown her right lung (her good one) to have collapsed. It's a very fragile balance to keep it open with gentle ventilation since ecmo does her lung function for her. They have tried to wean her ecmo flow down several times but she's not tolerating it due to her collapsed lung and PAH. Currently her ecmo is set at 120 with 130 being the highest support and 30 being the lowest. We have to get that right lung opened in order to progress forward with weaning but the doctors are saying it's a very slow process. They have chest x-rays scheduled for every 12 hours but it could be several days before they show any improvement.
The plan for the weekend is to let her rest. We had a very dramatic early morning on Wednesday. Her nurse woke me up at 3:00 AM to let me know there was a leak in the roof from the rain going right on to a machine that controls her kidneys. Before I could get up off the couch the lights came on and there were 20 doctors and nurses in the room preparing for us to evacuate to another room. It took all of them to move Ava and her machines inch by inch two rooms down. Also, earlier that evening as the nurses were shifting her on the bed, she slipped down and the cannulas in her neck moved slightly making the ecmo circuit cut in and out. They recovered quickly but I think both those events really took a toll on Ava. Her numbers have fluctuated more since the move. The doctors have recommended minimal stimulation to allow her to rest and let the gentle ventilation work to open her lungs. We have a very comfortable visiting area and we love seeing everyone but visiting in Ava's room will be determined by her numbers and nurses' and/or doctors' recommendations at the time.
Ava continues to get her strength and will from your love, support and prayers. She also got her own set of pink boxing gloves from Grandpa yesterday (see picture). I'm sure as soon as we can dress her, grandpa will order pink shorts and a robe to go with the gloves. She's our little fighter!