I never thought blogging would be hard. I just thought I'd type up my views on a few things and hit publish.
And then I had a cause. I had a reason to blog. And I find it extremely difficult at times to not verbally vomit. I have stayed away from anything just in hopes of getting the emotions in check. And now I've decided oh well!
The summer has brought many changes for the boy and his liver. Numbers have started to climb up. Biopsy has shown not so good news about damage levels. His spleen has grown. We are back on the roller coaster of going to doctors a lot. He is back on medications in high dosages and giving lots of blood. We HOPE to get some answers and find the magic cocktail to get things under control. My emotions... have flown south for the summer.
We traveled to UVA last month a few times. Once for fun - the boy went to a four day leadership in music camp and had a blast! And once to visit the expert on his innards.
The innard doctor says this is AIH. He said this is containable - the damage to the liver has reached irreversible yet. But he wants all sort of blood and pathology and endoscopy and more and more. He asked the boy if he was on the football or soccer team. The boy looks at him and says " umm no" Innard doctor says - do you play sports? The boy " Do you consider marching band a sport?" Innards: Yes I consider that a highly active extracurricular activity and I'm glad you have it, it is good for you. But no team or contact sports. Second restriction is, happily, something that doesn't much affect the boy.
The scary part came when the innard guy says I want you to meet the transplant team. WHA?!?!!??!?! You just said damage can repair.. and now transplant??? He feels it is better to have that meeting under calm circumstances instead of by emergency. Not that there is a need now - but he says WHEN it is needed. Gut punch. I ask the boy what he thinks of all this. He says "It is what it is. It sucks, but it is my life so I have to deal with it. Complaining won't help."
It may not help....but I'm still gonna do it boy. I'm glad one of us can be the adult.
