Slow and steady

Alli had a relatively uneventful day yesterday.  Jason's mom flew in from Miami and was able to visit with Alli for a brief period of time before she joined my parents at our house.  They turned off Alli's paralytic around noon yesterday.  By the time we left for dinner, around 6:00, she was starting to respond to stimulation.  We saw her feet move and she was starting to lightly grasp my finger when I put it in to her palm.  As her body continues to wake up we will see how she reacts.  It isn't uncommon for children, both consciously and subconsciously, to fight the ventilator.  If that happens, then there is an additional sedative they can give her to lessen the impact.  Ultimately she will need to demonstrate that she can breathe over the ventilator, so they have to be careful not to over medicate.  It is a delicate balance.  They made some additional progress on the ventilator settings yesterday and started to wean her off of the nitric oxide.  Her feeds continue to gradually increase by 5 mL per hour.  She is now receiving 20 mL per hour via her nj tube.  Yesterday's chest xray showed improvement of her pneumothorax, therefore they were able to start vest treatments every four hours to keep the secretions in her lungs loose.  Her right side continues to show some haziness.  They are monitoring that and making sure to suction what they can.  Otherwise, it may just be some atelectasis that needs to resolve.  Atelectasis can be caused by mucus plugs in the lungs.  The pulmonologist felt that there were likely some plugs deep in her lungs that he wasn't able to get with bronchoscopy.  So, continued respiratory therapy (vest treatments) should help to loosen that up so that the lung can more fully expand.  We hope to see these signs of improvement continue each day.  The process of weaning from the ventilator can be very complicated, therefore we expect there will be some setbacks along the way.  Her most recent lung and urine cultures show that her bacterial infections have cleared.  So, it is a matter of the rhinovirus settling down and letting her lungs heal as much as possible at this point.