{Day 5}

We are on day 5 in the ICU at Texas Children's Hospital. Ben is staying strong as we move forward with getting him well and off the ventilator. We met with his doctors this morning and we received information on his current condition and also a possible timeline for extubating him:

• Ben's new x-ray still shows heavy mucus/secretions, but little to no significant change
• They have continued the IPV treatments every 4 hours to help loosen the mucus
• They had not been able to suction much mucus, but the respiratory techinician did get a signifiant amount this morning so they think the IPV treatments are starting to work
• Ben's "brady" episodes where his vitals drop have decreased in frequency overnight and this morning, but still happen when he is handled or he coughs
• Due to these episodes we still have not been able to hold Ben
• Doctors have decreased the ventilator rate down to 17 (from 20 yesterday, 24 Tuesday, 26 Monday) -- making his lungs do more of the work
• He now has a "leak" in his ventilator tube -- this actually means there is air escaping around the cuff on the tube. This is a good thing because it means those airways are not as swollen and there for the cuff does not fully expand to meet it
• He is on day 5 of the antiobiotics to treat his bacteria pneumonia -- they still have not received the cultures to make sure this is the accurate antibiotic, but 95% of cases use this antibiotic so they are confident it is taking care of it, but this is still being watched
• Since there is a risk of being on sedation for more than 5 days since it is a narcotic (they can have withdrawal symptoms if on it for more than 5 days), they plan to try to not administer any additional doses unless necessary and even start to slowly wean him from it over the next 24 hours
• They are going to try to start some pressure support trials to determine when we can start the weaning process -- this lets him try to breathe on his own with minimal support from the ventilator. If he struggles to breathe, it automatically kicks on and does it for him. Some babies do not tolerate these trials very well since he essentially will be trying to breathe through a straw since his ventalation tube is so small
• The goal is to get the tube out this weekend -- but again, Ben sets the pace so we are taking it day by day

Once Ben is off the ventilator, he will be observed in ICU for 12 to 24 hours and then we will be moved from ICU to another unit. I am not sure the timeline from there, but there could be a real possibility we are home by early next week. Once off the ventilator, they expect him to have congestion/significant cough for up to 3 weeks, but at least breathing on his own and without laboring causing the distress he experienced this past weekend.

Last night Ben knew I needed a little hand holding.  After a very long, exhausting week, I was struggling to stay positive and tears were free flowing.  It was late...just Ben and me hanging out in room 23 of the PICU.  I was stroking his head (the only part of his body not covered in tubes and wires) and talking to him in the dark.  Even though Ben has been heavily sedated, his little hand grasped around my finger.  It was perfect, just like him.