Went to update the latest on how things were going since being home and realized I never posted the last update from the hospital ... so here is link now:
We got home and all was well. Manny's been doing remarkably well for the week home. He does have a very very strange rash and not sure what that is about. I thought I had it under control but now it's out of control again. Went to the Doctor yesterday and she gave him a new prescription strength steroid cream to use on it. Hope it helps. Poor thing wants to rip his skin off it's that itchy ... and it's down one leg so he can reach it.
He has a small cough still too. But that's it. Truly, truly amazing how quickly he turned around! He was one sick little dude and then VOILA! Like a light switch. He seems no worse for the wear. Me? Well, that's another story.
Meanwhile the kids went back to school on Tuesday. Jacob and Kaley are homeschooled (for lack of a decent middle school around here) and are in grades 8 and 7. Sam, Luke and Zoe go to the local public school that we love. Grades 5,4,2. Sam has the teacher he and Luke both had for 2nd grade. Luke has the teacher that Sam and Kaley had for 4th grade. And Zoe has the Mom of one of her best friends from last year. Manny is doing some preschool curriculum at home just because his brain is so sharp that he gets bored easily if we don't keep it fed. So we have almost a week under our belts and all is going well.
Yesterday, I also took Kaley to the doctor. She is starting on this strange swelling on her lip. When she was 3, she was diagnosed with a condition called PFAPA. They said it would resolve until she didn't have it any more and that would end about age 9 or so. Sure enough, it's been several years since we have seen a flare up. So it was strange to see it back. High dose course of prednisone and all will be good as new.
And yesterday we also had a nephrology appointment for Jacob. He has FSGS kidney disease. So the blood and urine tests are decent. If someone without FSGS had these labs, doctors would be greatly concerned, His liver function is elevated. He's spilling proteins, his creatine/protein ratio is out of control. BUT ... compared to other kids with FSGS, his labs are stable and that isn't what was expected.
She said that the worst demographic constellation for prognosis is ... male, Black, teenager. And Jacob, of course, is all of those. She said that 2 years ago when we first met, she held little to no hope of him being off dialysis for more than a year, maybe two. And here we are 2 years later, BETTER than he was 2 years ago. Why? Couple of things. First, we're praying hard as are many people around the world. Secondly, we're trying a few alternative/homeopathic/herbal things that seem to be working. She said we should just be thankful. I asked about if they ever use the term remission or can you ever be without FGSG and she said no but that he would be what is called "Controlled" (in other words, stable labs for the past year). And she is thrilled and optimistic about his future. I also asked if one goes from stable to crash and she said not typically, that we'd see decline that could be quick but it doesn't just have the bottom fall out.
So for all of those praying for Jacob, keep it up. It's working. He has most of his energy like any other teenage boy. He is starting to believe he could do extra curricular activities again. And things are feeling a bit hopeful.
I'm sure there are more things to update but that's what I can remember off the top of my head.
Thanks for supporting us in prayer. We truly continue to believe our family is held together by prayers~!!