Benjamin is still on the conventional ventilator. It got explained to us on Sunday that it isn't really better but just different than the oscillating ventilator. With the conventional ventilator they can tweak the setting to wean him off easier. But he is not ready for that yet! He is still on 40% O2 and higher pressure settings. They move him from back to front every 6 hours and he always goes up on his O2 and doesn't tolerate it very well. But they have to move him otherwise he gets bedsores. On Sunday when the nurse told me that he didn't tolerate being moved very well, I mentioned that I probably wouldn't be holding him then. To which she replied that "no, I would love to tell you yes but he isn't ready for that and probably won't be for a while." I was really discouraged that night as I really want to be able to hold my little boy again. But I also don't want to hold him if it is going to make him go backwards.
Yesterday when I was there, I gave him a lotion rub and he seemed to like it. When they moved him from his stomach to his side, he did not like it at all. He started kicking his legs and moving his hand trying to grab some lines. Even though I don't like to see him upset it is good that he is fighting and showing more strength. A couple weeks ago he didn't even do this. Now he is showing when he doesn't like something. He started crying when a physiotherapist did chest physio. He likes the patting but not the vibrations. It's so sad to see him cry. His face scrunches up and tears come out of his eyes but he can't make any sound because of the ventilator. Then when I told him that I had to go he started crying again.
Please pray for strength and safety for us as we drive back and forth. I try to just look at just the day or week as when I look ahead I get very discouraged. We've been told it could take up to 6 months of him being in the ICU but that isn't a firm number either. It all depends on Benjamin and how fast his lungs heal. Also please pray for all the other families who are going through hard times right now- a 17 year old boy who has ended up back in hospital, a 14 year old girl who is at Children's, and a family who's father just found out he has cancer.