Bionic Baby

The speech therapist came today to work with James while we were there. (It was the same person who worked with Matthew -- she's great! We've learned a lot from her.) He did better than I expected, perhaps because my expectations were so low after the nurse's report last night. James has some of the same issues that Matthew did with maintaining focus (what they call state organization). He also is swallowing several times with one mouthful of milk, which makes him work harder to breathe (because every time you swallow, you close off your windpipe.) These are typical issues that they see with babies who have been on ventilators and not feeding. The therapist was slow and patient with him, and he drank about 5 ml and then started having trouble -- but it's a start!

They're going to use a special bottle called Bionix to get him eased into the process. This bottle has a special nipple where they can control the flow of milk, starting with very small amounts and working up to the kind of flow a regular nipple would give. (The therapist seemed to think he might not necessarily need it, but it can't hurt.)

He'll still be getting whatever he doesn't drink from the bottle through a feeding tube. They're advancing the volume of his feeds by 10 ml every 12 hours, assuming that he tolerates the higher amounts. So, right now he's at 19 ml every 12 hours, then he'll go up to 29, and so on, until he gets up to 50-something ml ("full feeds"). That schedule seems kind of fast to me, but they were very conservative at the beginning, and I guess that since everything seems to be going well that they aim to get him up to full feeds (which means off the IV fluids!) as quickly as possible.

They were also looking into ordering supplies for his ostomy for us and finding a home health care nurse that can help check on it, so that sounds like they're planning to get him home before his next surgery. At this point, the timing really depends on his feeding (so we're talking at least a week, and I doubt it will be less than two weeks).

[Other posts for today below.]