Wednesday, February 4

When we got to the hospital this morning, Caden's nurse told us they had decided not to extubate him today because Dr. Reddy really didn't want it done yet. We are happy about that because we don't want him pushed faster than he is ready. They did wean him down on the nitric oxide overnight and this morning they took him off it completely. They are giving him another medication to keep the blood vessels open.

During the night they stopped his feeds because he threw up some of what they had been giving him. They didn't think it was anything to be concerned about because babies will often spit up food. But for the meantime, they put him back on TPN and will hold off on feeds for now.

In rounds the doctors decided to reduce his ventilator rate to zero and mimic a CPAP environment (which they refer to as sprinting) to see how he handled it. They started him on it mid morning and he tolerated it quite well. They even removed a drainage tube from his abdomen and suctioned him during the first hour he was on it and he still did okay. His blood-gas after he'd been on it for over an hour was pretty good. They left him in sprinting mode for about three hours before giving him a little more assistance to give him a break. Then, around 5 pm, they put him back on the sprinting mode. He seemed to tolerate it pretty well and his blood-gas afterward was good enough. I guess they're planning on having him do another sprint in the morning.

We talked to the doctors about the amount of secretions he is having and asking how he would get those out once he is extubated. It sounds like they feel the risk of leaving the tube in is greater than the risks of taking it out. They said the tube itself can create some of the mucus in the lungs and once it is out the secretions would probably be less. They also said he would be able to cough them up himself and if he needed assistance they would be able to help suction. When we asked about how much pain he might have from coughing after having his chest cut open, they said that studies in adults show that after day five after surgery, the pain is significantly reduced. So, that would mean tomorrow is five days after his chest closure. It's so hard to know what is best sometimes. Greg and I don't have medical backgrounds but are doing our best to advocate for Caden based on what seems logical to us and from what we learn from the medical staff. We try to ask lots of questions and try to be present during rounds so we can hear the discussions between the doctors in regards to Caden's treatment plan. It also sounds like the amount of secretions they are getting out have significantly decreased in the last day or two so they don't think it should be too much of a problem.

This evening the plan as we know it is to give Caden a couple steroid shots during the night to prepare him for extubation tomorrow morning. Both yesterday and today were very good days of progress for him and we are optimistic about tomorrow. Of course we'll keep you all posted.