Still trying to figure out the whole sleep issue with Ben. He seems to be doing much better since coming home from the hospital on Terazadone WITH Melatonin. The combination seems to work. We still have days where he will sleep for almost 24 hours and then NOT sleep for another 24 hour period. But mostly things are good. Ben had blood work drawn every couple of days to check his sodium and potassium levels since they were both running low while inpatient. After 4 draws and all normal results, they are putting an end to finger sticks. Hooray for that. I'm still worried that his pneumonia isn't quite clearing up. He still has some really thick and colored secretions and his saturations have been running low. He's still needing quite a bit of vent support as well. I take him off for one small period every day just so I can hold him without all of his tubes and wires. I noticed last night when I did this that his nose was flaring with each breath. That tells me that he struggles now without his vent. Makes me sad. I miss having my boy unconnected all the time. I miss the freedom to pick him up and go. But I'm so grateful that he's still here with us, tubes...wires...and all.
(I'm not very quick on my feet when it comes to capturing Ben's smile. This was a lame attempt because the best part of his smile was already gone. You can kind of see a glimpse of the fading smile here though. I was moving him from his bed to downstairs...I'm thinking he was happy to be in my arms and off the vent for a few minutes.)