Wednesday, June 17, 2009

Little Update

Thank you for keeping Keegan in your prayers as we reran his labs yesterday. His immunosuppressant levels (amount of the drug in his system) was just a hair low, so we made no changes and will recheck on the 30th. Keegan's cardiologists in Dallas have agreed to keep him on the lower end of the spectrum, as was decided in Boston. We seem to have better blood count (red and white cells) when his immunosuppressant levels are low, and we are ok with under-suppressing him just a touch since we've had a recent heart biopsy, which showed zero rejection (praise the Lord!).

His liver numbers were better but barely so; some would call the difference too small to matter. We're really not sure what to do with this information. They're not high enough to admit him, but we don't want to "chase our numbers" either. For now, we're going to check them once a month unless they continue to creep higher and higher. The GI doc is going to run one more test on frozen tissue from Keegan's last intestinal biopsy, perhaps even ask Boston to run it on the liver tissue there. No one thinks we'll get an answer from this test, but it doesn't hurt to try.

Lastly, Keegan's magnesium was up another touch, again almost not enough to matter. The problem is that putting him back on magnesium supplementation will cause even more diarrhea than he already has, and he is averaging more dirty diapers a day than we would like at this time anyway. Again, not sure where to go from here on that aspect except to check it again next month. Keegan's scheduled for a very big lab draw on the 30th for immunology tests, so some of these numbers may be run again if we don't have to take too much blood in one stick.

We're still waiting on Keegan's therapy plans to be approved. The insurance company is dragging its feet, seems like the therapy center is dragging its feet. I know it hasn't been that long, but it sure seems like its taking forever. I spoke with the center again today, and we're hoping to have some kind of plan together by next week. The evaluation for the state program will be next week. Gray and I have decided to start playing with Keegan's tube feeds a little on our own, trying to get him some more time off the pump and backpack-free.

Other than that, we're just trying to stay cool as we approach our first official 100+ degree day here in Texas. Blah. Even more reason to give Keegan more time off his feeding pump! I've been trying to write this update all nap long, but I believe Keegan's having one of his transient intussuseptions this afternoon (see clarification on this painful episode a few posts down). No fun, so I'm praying it'll pass soon. He's no fun without a nap! Thank you again for your continued prayers for our Bug. There's not much more we can say but that today!