Sunny Days

Henry has had a great week! He has been off of his milrinone since last Monday afternoon, and he is looking better than ever. His BNP is staying low, and his echos show some slight improvement. This is likely the positive effect we were hoping the digoxin to have once it got into his system.


Over the past week we have also begun weaning him from his methadone. The doctors had indicated that this might be a long process, but he is already down to one-third of the level he was getting. If he keeps acting well, we hope to have him off of it by next next weekend!

More than the heart meds, it is likely the weaning of the methadone that has had the best effect on Henry. Over the past week, it is like he has woken up again. He has much more time where he is awake and alert, looking at people and smiling and laughing. It has been so great to see him again!

We continue to work on his feeds, and he is still only taking about half of his feeds by bottle. We can tell he is getting hungrier, as he typically wakes up and starts crying about a half hour before a feed, but he just loses interest after a while. We also get the impression he is getting hungry, as he has figured out how to throw his thumb into his mouth!

 For the first time in his life, we were able to take Henry outside. We visited a little garden attached to the ICU this afternoon, which Henry loved - even if he slept through it! Given we were at though, we are excited with how far we have come, and we are hopeful that the remaining road home is growing shorter.