SLOW
thats the way Juliet likes it! This has become a humorus statement around the medical team!
The Doctors, one in particular, say it with quite a chuckle! Some just shake their heads.
Juliet will give hints. And after awhilllllllle, if you haven’t figured it out, she will give one big one! “This is what’s up, guys.”
Rounds with the team: “just taking it slow with her today, nothing new. Not going to change anything.”
Slowly she is improving! After 19 days on the vent she was stable enough to take her off of it.
Today, On day 28 of This admission, she is still in the PICU here at Children’s. She is working slowly to kick the issues with withdrawal from sedation drugs. Once she conquers that then; she will move on to weening the oxygen support.
One thing at a time. Again! that’s the way she likes it.
RareJul 
Hi,
Our son, David, who will be 9 next week, was recently diagnosed with Vici Syndrome. We have 5 children and he is our youngest. He was in and out of the hospital for the first 2 years of his life and then hadn’t been in the hospital for 7 years. He was again in the hospital for 2 months this year. We would really like to get in touch with you. Please feel free to contact us. It seems from your posts, that your daughter has been having respiratory issues. When our son was about 1 1/2 years old, we started respiratory care which includes various nebs, vest, cough assist and deep suctioning. This has been very helpful. Even though we just found out about his diagnosis, we have been recording everything and tweeking things (including his diet – g- tube fed, since 4 months old) for years. We would really like to share what we’ve learned over the years.
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