Another day, another let down. Today started out great, normal day running around the house doing things for mom. But the dreaded tone I try so hard to forget crowded my every thought. Nothing else in the world matters at this point except what I feared happening. You could hear the nurse downstairs with great dread and sorrow, repeatedly say "oh no" and "this isn't good." After hearing that about 3 times and the frustrated sighs I ran downstairs only to find Jacob's shirt completely soaked. That only means one thing~ his site is leaking. It's like those shows "ER" and "Grey's Anatomy." Envision the surgical scenes where the doctors are piling gauze on an open wound when operating. That's about what this looks like; you just see the gastric secretions pouring out. There are a pile of paper towels or baby wipes (really whatever you can get your hands on) and you just keep adding more to his site. It drains so fast and so much that it can be difficult to get it to stop.
Today is just too much for me so when all of this was happening, I ran upstairs. I couldn't take it. My mom had called in to check on how things were going today and the moment I had to tell her about my brother's site is a melancholy memory that I will never forget. It's almost immediately that the moods change; mom could tell my voice was quiet and sad. The moment I told her, her tone changed too. This has been a year long battle with Jacob. Everything we try just abruptly fails. No doctor, surgeon, nurse, or any human we've been in contact with thus far has ever heard of such a thing. You cannot treat this by the books, it requires out of the box, invasive, creative, problem solving. Little Jacob's life depends on it.
I just don't understand. I say that a lot because it's true. I really don't know why any of this is the way it is. Just yesterday we were a happy family, we had Jacob playing and without his oxygen, because he can breathe on his own now and it was a fun day. He had done the most moving he's done since before Thanksgiving when his stomach hurt so bad and yesterday everything was looking up. But apparently, those days are just not meant to last. They are taken from right under your feet, leaving you on the ground.
Tell me, what am I supposed to have hope for? Doctors have tried everything they've been able to think of. They are repeating past procedures that didn't work in the beginning but they're just so desperate that they will try anything at this point. If Jacob were just a few years older we may have been able to have the upper hand. If a lot of things were different, we could have this healed by now. But that's not how God has laid it out and that's not the way things are going.
For the first time ever, I will have no Christmas gifts under the tree this year. The only ones who get presents are my three younger brothers. And you know what? There isn't any materialistic, technologically advanced, thing that I want more than having my brother home for Christmas. Our biggest challenge is not that we cannot afford gifts but that we are trying to keep Jacob out of the hospital. The Christmas lights, decorations, and the tree are all very nice but they don't mean nearly as much as family does. Their value is hidden when loved ones are ill. Though I think I'm making one of the biggest requests for this year. And that's that my all of my brothers and my parents are home for Christmas. I don't want there to be any sight of stress or worry about Jacob's site. One day, is all I ask. It's not realistic to ask for a whole week so I'm just asking for Christmas…Christmas Eve would be wonderful too….but I understand if that doesn't happen.
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