Waiting Game

I am just loving point form these days...

- Brian is waiting for a team of specialists to decide what to do next. They had a meeting yesterday to discuss a few cases, including Brian's, and will decide what's best. So today we'll find out what the near future holds.

- Brian has been feeling better and better. The PLEX treatments have helped normalize everything in his body (with the exception of his kidney function, which can actually stay at quite a low level without hurting anything) With that said, he DID have one blip in his BP - it went up to about 170 at one point. Hopefully that was just a momentary thing and not a sign of it going out of control again.

- One of the specialists called me to explain things to me from his perspective. It was a tough conversation. He said they're now classifying it Atypical HUS (Hemolytic Uremic Syndrome) and it's so rare they don't quite know how to treat it. He said the PLEX is working short term, at least, and the hope is that it'll work long term. But they don't know. Everything is still really up in the air. He says the biggest indicator of how Brian is actually doing is his kidney function, which has not improved significantly enough for them to be hopeful yet. In fact, he has lost a LOT of his kidney function and it may be permanent, or it may improve over time. The improvements they've seen have come SO slowly (even for an Atypical HUS patient) that his hospital stay will be awhile yet. I asked him what we'd do if the PLEX doesn't work. Kidney transplant? He said no - the disease causes blood clots that have ruined an otherwise healthy set of kidneys. If new kidneys were put in, the blood clots will do the same damage to the NEW kidneys.

- There is still a chance Brian's genes have something to do with it. They are still investigating his cousin in ON to see if there's a link there, but have been unable to speak to the specialist there. I was told, also, that if there IS a link we won't know if it's been passed down to my kids. Testing for this specific gene only happens in very few "testing centres" in the world. We could make it happen, but it would probably cost us a lot of money.

Pray:
- for wisdom for Brian's doctors. Apparently there's a bit of a "shift change" happening and Brian will be having a new set of doctors working on the case (hence the meeting yesterday, I believe) A fresh set of doctors may open up new ideas/treatments. Here's hoping.
- That Brian's kidneys function better and better every day. That the damage that's been done isn't permanent.
- That his BP stays stable
- Again, for the kids and I while I manage things at home here. Pray for ENERGY for me! And for God's continued provision.