11.04.10 - James is home

I have to say I am shocked at how well James is bouncing back. He is still sleeping a lot, but he was before this episode. He has to finish his antibiotics and build up a tolerance for tube feeding again. Also, the doctor does not want him eating anything by mouth for a week; he suspects James's pneumonia was aspiration-related. James gave me an enormous hug and big smiles today. We will see when he can go back to the day program - he won't go tomorrow, anyway. Thanks millions for the prayers. B

11.02.10 - Better, we'll see

The plan was to move James out of ICU today. He still has a touch of fever, which is preventing the replacement of his temporary g-tube with a permanent one. I saw him yesterday and he at least had his eyes open. It warmed my heart that I was able to get him to smile - he liked my new "Clic" reading glasses that come apart at the nose piece (cf. Dr. Sid Hammerback on CSI:NY). That is the one and only smile we have seen, but it was a big one. James got a PICC line, a semi-permanent access for blood tests that will keep him from getting stuck multiple times for each test. James has never flinched or complained about this sticks, even when he was a little boy, but the techs are having a hard time finding veins.

We still are not sure what's going to happen. I believe James will be allowed to go home to his house because it is so well set up, but I don't know that he will bounce back to where he was. One palliative care nurse suggested that James was on a normal trajectory for people with CP - slowing of digestive tract, lung difficulties. We almost never think about James's CP diagnosis, but this makes sense.

Thank you for your prayers; I am feeling better. Magnificent Mary is at her best in this situation by the grace of God. I'll keep posting. B