Ava Today 5/9/2013

Today Ava has been doing well, she is on antibiotics and hopefully in a few weeks she will be back to where she was before. We are hoping that when the infection she has is done she will be on a quick road to recovery and with the esophageal dilation (maybe in 2 weeks, depending on her recovery) we hope that she will begin to feed normally without any more spells. Right now she has a feeding tube that will keep her nutrition up and digestive system going as well as the constant suction to make sure her airway is clear. Please pray for a speedy recovery and strength.

From Amber: 

After another neurology consult it was decided that Ava's tremors are not seizures, so she will be weaned from the phenobarbitol medication starting tomorrow and she will get a new drug, clonadine/clonazepam starting tonight. i am not crazy about this new addition, but the Nurse practitioner assured me that NICU babies seem to like the med. For Ava it will be used as a neuromuscular relaxing agent. she was also prescribed Ativan/Lorazepam as needed for tremors...i don't think it did diddly earlier today. she had several desaturating episodes today that were solved with aggressive suctioning and a boost of oxygen. the nurse has to be right there because she goes from 99%oxygen to 40% oxygen in less than 1 minute. cardiology saw Ava tonight and decided she was doing fine from a cardiology standpoint, so they will just continue to monitor. 

after doing some reading i have some suspicions about her spinal cord. I'm not sure if she had a spinal ultrasound done. i would hope so, but it would have been done before i got here. a tethered spinal cord is common with kids with her condition. 

Ava 5/9/2013