Ayden and the Good Day

They gave us a sleep room tonight, even though Ayden is doing well. I think they felt sorry for us... especially when I told them that I hadn't left Ayden's room all day, not even to use the restroom. I have been stressed and sad and overwhelmed and tired and concerned and questioning, and the hospital staff has responded to all of those feelings. This afternoon, doctors, nurses, nurse educators, charge nurses, Ayden's speech pathologist and social worker, and various other staff members have been working together to figure out what is going on with Ayden and to help us feel less frustrated in the meantime. They have talked and talked and talked to us and each other all day. Bryan and I feel more at ease about Ayden's current situation, though we will never feel truly better until we get our son home.

They did an ECHO, and his heart is still doing well. They took some spit to see if Ayden has an infection; usually it takes 48 hours to see if the saliva grows bad bacteria. They are investigating if Ayden has diaphragm paralysis on his right side. They will continue to repeat chest x-rays in the mornings. They will continue hit therapy. They will continue diuresing him.

In the foreground, Ayden is demonstrating his strength by allowing them to wean the vent to 35% oxygen (one needs to be at least 40% to be extubated); his sats have been 73-89, usually depending on positioning and the amount of sedation on board. He responds well to hit therapy, and they have been able to suction a decent amount of gunk from his lungs. He is tolerating his feeds well, so that's a praise; they have even been able to put his regular medications in his tube, rather than through the IV. He is peeing well again, which will aid getting rid of the lung edema (wetness) and possibly the atelectasis (collapse). He hasn't really been awake, but he does occasionally move his arms and legs around. He seems especially interested in reaching for his vent, which makes the nurses nervous, but he hasn't seemed hostile toward the equipment; he just appears to want to hold something close to his face.

At the end of the day, it's been a good one. I am praying for a better chest x-ray in the morning and for continued good days.