Today hasn't been Gaines' best day. His oxygen is back at 40% and he's breathing pretty hard. The doctors feel like it's because he quit getting the Lasix on Monday. That was my immediate thought as well but this step backwards has been disheartening (to say the least). Today he'll be getting a double dose of Lasix and I feel confident that it will help but seeing 40% brought on a rush of disappointment. It makes me wonder when all of this will end. I got upset when I was talking to the doctor and nurse about it today. Its really hard for me to talk about him not getting better without crying.
The doctor told me that its really hard to treat Gaines because they don't know if they are treating him for Chronic Lung Disease or heart failure...she's says probably because its a little bit of both. She also confirmed what we'd been thinking, that transferring him home on a ventilator would be a major set back for him. This is because getting him back off the ventilator would be very tough. It just reminds me how hard it will be to even get him to a hospital back home.
I'm trying to keep in mind that this will end eventually. One day we'll be able to take our baby home. Its just really hard to focus on that when he's having a down day. When I was talking to one of the doctors she told me how hard it was for them because we kept looking to them for answers and they really didn't have any right now. It occurred to me that she's right...so many times we look to them for answers and I think maybe we haven't been looking high enough. Of course we are faithfully praying for Gaines but maybe we aren't relying on God for our answers. Maybe our mission here (whatever that is) isn't over yet.
I know that all of this is happening for a reason but stepping back and letting God run my life is one of the hardest things I've ever had to do. You wouldn't think that would be too hard of a task but if you really think about it, it is...for me anyway. It is so easy to get angry with God when things aren't going just like I'd like. Its in those times that I really have to focus myself on how good He's been to us through this. I'd love to list all the ways he's taken care of us but there are just too many to list. He has brought Gaines so far and I know that He'll see us through this storm. Beau reminds me all the time that the doctors are only reacting to Gaines and that its only because of God that Gaines is with us. The doctors here are wonderful but we know that they are only God's pawns.
Gaines' heart echo is still scheduled for tomorrow. They also did a chest x-ray on him today. Please pray that something positive will come out of these two things. If they don't show that things are getting better, I pray that they at least point to something that we can fix.
Please keep Gaines and our family in your prayers. Please pray that God will give us direction as we try and decide what is best for Gaines.
Love to all,