I worked 4 hrs this morning packing up an unairconditioned upstairs loft that was full to the brim of collectibles. Fun times. Now I'm home cooling off and relaxing a bit.
My dear husband got the honor of taking a brand new nurse and ALL 5 children to Eli's doc appt. Mind you it's 104 degrees outside and this is Eli's complex kiddos doctors so these appts usually last about 2 or 3 hrs. The doc is again concerned about Eli. He has gained almost 2 lbs of weight in a week. It's all fluid retention. The doctor is concerned that his renal system isn't properly working. This much fluid retention can cause alot of pulmonary and cardiac issues, not to mention the pressure it in general puts on the renal system. The doc is running labs, looking back thru old labs trying to spot something that may not have been noticed in the past, and calling some docs in for help. If it's not one thing then it's another. I so wish we could just get to the bottom of it all and make it all better. But the problem is we have gotten to the bottom of it all and it's fucking mito. it's incurable. there isn't a damn thing we can do about it to make it better, to make it go away. i always hate mito, but some days i hate it even more. today is one of those days.
There is 1 other thing on my mind and heart. An incredibly dear friend of ours just received horrible news. She has bladder cancer. She has been there thru every step of this journey with Eli. Not only has she been his nurse from day 1, but she has been one of my very best friends and part of our family. I don't know how our family would have gotten thru this last 20 months if it hadn't been for her. Eli and I will be making a trip into Wichita soon to be there with her. If you can all please say a quick prayer for her and her family right now as she gets ready to undergo surgery, chemo, and everything else. thanks...oh and you guessed it...i HATE cancer AND mito!