Last year was the first time I missed Holidailies since I started doing it back in 2008. I guess it was because last December was so stressful. This month marks the 1 yr anniversary of Ki having his TIPS procedure done, or as he calls it, his robot part (because it is made of metal mesh). It was a very scary time with a lot of unknowns.
Well things haven’t changed much. Life is still a scary thing with a lot of unknowns but at least there’s a lot more hope. Actually being on the transplant list, as surreal as it is, makes for a lot of hope. It allows for a little room to breathe and a belief that just maybe there is an end to this journey through hell and a happy ending. By no means will any of it be easy but I am so ready to get off this ride that is basically a descent into darkness and hop on the next which will hopefully take us back into the light.
And we might just get there a whole lot sooner. The other day UNOS announced that the new MELD score calculator that adds sodium to the overall score will go into affect on January 1st, 2016 and our transplant nurse coordinator confirmed this for us. This is huge for us. I have now officially lost count how many times Ki has been hospitalized for chronic low sodium. Despite every thing they have done to attempt to raise it, it stays low and is a constant battle to keep him out of the hospital. His MELD could raise as much as 10 points when this goes into action and it might even be enough to push him to or near the top of the list. I keep having a strong feeling that his transplant will come between Jan-March of next year.
So that’s our little Christmas miracle I suppose… for that to finally be happening. I know it was debated for some years and I feared it would never happen, but yes… finally.
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Tonight we went and got a tree finally… a beautiful real fir tree (no more pines here bah). But… we got it home and found out our tree stand from last year is broken so it is out chilling on my porch and I swear to God if anybody steals my Christmas tree there will be hell to pay. I’m trying to get lights up outside as well… Christmas is just starting to sneak up on me too fast this year!
Living across the street from Dad is certainly an adventure at times. Tonight he sent me a text that we could come over and watch Rudolph the Red Nosed Reindeer with him if he wanted… now how are you going to say to no to your 59 year old father when he wants somebody to watch Rudolph with him lol
this is the nonsensical mass that is my life. welcome. 