So, what’s new with us? Well, the girls are out of school! This fall Abby will be heading into 4th grade and Hb into 2nd.
This is the time of year that my work really steps up. AVA is adding an 8th grade this year. So I have to add all of the new teachers and classes to the website and adjust the menus. I also have to remove the teachers that are leaving us and add their replacements. And, finally, I have to archive all of the teacher weekly news pages. I’m busy most weeks during the year – but during the summer I have LOTS of work 😉
Jamey is preparing for a couple quick work trips. Candus is AMAZING. She has been super at making sure traveling is as easy as possible for Jamey. I believe the only difference he has now is that he does have to check one bag – his cycler. Candus ships everything else so it is waiting for him at whichever hotel he happens to be staying. Candus is also the most amazing hugger. Her hugs can turn your mood directly around in an instant. Love her!!
Now, the reason you are reading… Although Jamey’s team has upped his dialysis to 5 exchanges over 10 hours – his numbers aren’t so hot. His creatinine is now above 20. Remember when we were sad to see it go to 6? Sigh. It shouldn’t be this high and he has done a couple different tests to help determine what is going on. He also is SUPER anemic. He has been getting Epogen injections to help with his very low hemoglobin. Today we found out that the shots aren’t helping at all and they are raising the dose and having him come in twice a week to get an injection. The result of the anema/low hemoglobin is he is exhausted. Always. Being the trooper that he is he sure tries to participate. But I can see it wearing him down so quickly. Praying this upped Epogen amounts will really help. And yes, meat helps with anemia. However, meat has phosphorus. Which his kidneys can’t remove. He takes a handful of phosphorus binders EVERY time he eats – but that is like taking cholesterol medicine and eating french fries. He still has to limit phosphorus (which I’m finding is in everything!). He will meet with is doctor in a couple weeks to discuss the findings of the tests and see what changes we can make to help.
Donor news. We have a potential donor!! He has been through the two major ALL day days of testing. He has a couple more tests to go through next week. I will update here if he is indeed a match and we get a surgery date. I talked to Katherine and she still believes we will get a kidney this summer (although we know there are no surgery dates left in June and most of July — I guess August is still summer). She assured us if this donor is not a good match we have more potential donors ready to be tested. Every day counts for us. Thank you to every one of you that called to see if you could help us.
Okay, that is all for now. I will keep you posted as we find out more about his crummy numbers AND our possible donor!