The long road

I feel like reality slapped us in the face today. Everything has been going great and on the blood pressure/blood chemistry front, it still is going great. And yeah, his kidneys still don't work fully and he'll require dialysis for awhile, but we can handle the 3x/wk drive to FWB to get that done. Today we realized that getting Paul standing and walking is going to be pretty difficult, and I think that will be the long pole in the tent.

Paul sat up in the chair today. This was a huge feat and I am very proud of him. He had to sit up on the edge of his bed, get on his feet, shuffle and pivot, and sit down. It doesn't seem like much, but to a man who has had all his muscles disappear on him in the last week, it's an amazing accomplishment. He sat up for about 40 minutes while Suzie and I left to get him a smoothie. He talked to his mom and worked on some leg exercises while sitting in the chair. I think he might have overdone it a little and had a horrible time getting up out of the chair. I can't blame him because gravity was working against him standing up this time, but it was frustrating nonetheless. They had to get several nurses to come help him back into bed, after which he was completely exhausted. I was emotionally exhausted and felt defeated because I couldn't do anything to help him. All I could do was leave to get a shot of Ben-happiness.

I got Ben all settled in for a night with Aunt Janet before going back to the hospital. Ben didn't care much when I left and Janet said he was great, had fun playing in the bath, and went right to sleep like the perfect little boy he is. Paul was still really sore tonight, but we had a good talk about goals and expectations. We're going to try to take it a little slower but also do exercises more frequently. We've been waiting for physical therapy to get to his room to do anything besides simple leg exercises, but we learned today that the regular ICU nurses can help us just as much as the PT nurses. So, we're going to start with smaller steps every day (i.e. work on just sitting on the edge of the bed one day, then to standing, then to taking a few steps, then to sitting in the chair), but we'll also start doing this at our initiation, trying for 3 times a day and moving on to the next step when Paul's ready, instead of waiting for the one time a day that PT shows up (unannounced and at random times...).

I really had no real grasp on what this rhabdo really does to you until tonight. Now, Paul has never really been a real muscular guy, but I could always feel his muscles when he flexed. Tonight, he lifted his arm for me and there wasn't much left there besides a bunch of skin. The rhabdo has just broken all the muscles down all over his body. No wonder it's so difficult to put any weight on his legs. I don't want to get any of you down, Paul will recover from this and he will be on the floor playing with Ben again soon. It just may be a little longer than I was hoping for.

Please continue the prayers. They are felt and are very much appreciated. I know word of Paul's condition has spread into many, many circles and we feel so blessed to have so many family members, friends, coworkers, and even strangers praying for him. Thank you, thank you, thank you!

I don't know how many times I've read this verse, but it really stood out to me today and I felt the need to share it.

"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24