Two steps forward, one step back. Or is it one step forward, two steps back?
Well it's been almost a day and a half with no fevers. He isn't coughing as much. Also, they took that nasty scalp IV out, unfortunately scalping him in the process. (Despite some adhesive remover it ripped out about 50 precious little hairs.) He came down some on his O2 last night. Then they tried taking him off the CPAP and within an hour or two he was satting 68 and had some collapse on the left side despite being on 60% O2. So, needless to say he is back on CPAP. He does seem more like himself to me. More alert and fiesty.
They told me they definately won't be going ahead with starting the ketogenic diet next week. They need to wait until he is 100% as it can lower his immunity. So it'll be back to Seizureville, population Ambrose.
My name is Ambrose James Brown. I am a very special little boy. My late sister, and personal guardian angel, Sophia and I have CDG-1d, which causes us to have many disabilities but it does not define who we are. I am sweet, loveable, adventurous, active, cuddly, strong and brave, and am the apple of my parent's eyes.