July 9th, 2006. I spoke to Beau's nurse last night and this morning. He's come off the new mode of ventilation and back onto his original one. He was building up too much fluid in his lungs due to the CLD (chronic lung disease. She said it's not a step back or a step up or down, just a different way of keeping him breathing. Since going on the other mode he's been doing great. All of his blood gases so far have come back great and they were able to reduce the amounts of breaths the respirator gives him to allow and encourage him to take more breaths on his own. He's definitely happier about it. He fights the respirator much less and doesn't dsat as much as he did before. I say that now, but who knows what tomorrow will bring with that boy! All of his nurses say he's lucky he's so cute, it's his only saving grace.

They are bumping up the calories in my milk again. He's doing great with the extra protein and so far he's been tolerating being fed over one hour instead of one and a half hour feeds. I'd like to see him get back on drip/gravity feeds but I don't want to rush him either.

Also his night nurse, whom we adore and wish was a primary, calmed me a lot about visitors and such. The rules are: everyone needs to be in good health (no colds or flus or sniffles or anything like that), everyone needs to wash their hands before they touch him, don't touch his hands or his face as that's a very quick way to spread RSV, and to keep Purell in EVERY room of the house and make sure all visitors use it. PHEW! I feel better talking to her about such things. I'd hate to be isolated for the whole RSV season (autumn to spring). I'd get cabin fever, and then what kind of mom would I be!?

Please keep praying for Beau. It really means so much to us and I believe it helps him. Thank you!