Thanks to all of you prayer warriors for being patient with our slow updates. It has been more difficult to blog accurate reports since Katy moved to UVA. Because of distance and playing phone tag, details are often obsolete by the time we think about blogging.
At this point UVA seems to be in good communication with the NIH. That took awhile to get going, but it looks like the UVA doctors are catching on to the root problems of HPS, rather than focusing on peripheral symptoms which would be almost anyone’s tendency. Katy will probably be at UVA for several more days at least because she is still completely on TPN and in much pain. They did start her on some new pain medication yesterday but that drug takes about a week to affect the nerves enough to make noticeable changes. We just have to wait and see…
She has had some really good nights this week and that has helped her emotionally as well as physically. She is hoping to have enough energy today to visit a five yr old boy who is at UVA with cancer. Spasms are still intermittent, and she has discovered that she can tell when they are about to start and end. Despite previous guesses by neurologists, Katy believes that she has them due to the intense pain surges that she is currently feeling. Hopefully the spasms will go away when the pain does.
- That Katy continues to improve rapidly and gets the rest she needs.
- That Mom will get the rest she needs.
- That the right pain medication combination will be found soon.
- For safety on the road for Dad and others who have gone to visit Mom and Katy.