The placement of the nj tube is not a pleasant procedure and Jacob never complains about anything being done except this. They don't sedate him so he feels just about everything. Of course they lubricate the tube pushing it through the nose, down the esophagus, and into the stomach. But he can still feel it. In truth it doesn't matter how much lubricant is on that tube, I'm sure it still hurts because he acts like it does.
With that considered, I feel like these blog posts are never anything of real information. It's all trial and error. There's nothing new being done; it's the old strategies that are being combined in different ways, that's all. It's not good when your doctor has to back track. Which is exactly what Jacob's are doing. He has new doctors in addition to the old; specialists from a variety of fields and they all have their ideas. Then when they don't work they back track to what our original surgeon did in the beginning. I guess we are a little further along because they actually removed the g tube this time. It's less tension on the hole so hopefully it will close.
Evidently, I haven't figured out how to make any sense of this yet. I have many mixed emotions and I don't want there to be anymore confusion than there already is. This isn't my fight, I don't have nearly the amount of strength my brother does. But I am struggling, emotionally. I don't think there's anyway to keep that from sounding selfish. In theory though, emotions come through in writing. I don't know the reason for any of this; I don't know how much longer he has to endure this crap; I'm scared to think about what the truth of it being over really means, life on Earth or life in Heaven. I had all of these long term commitments out in Charlotte this month. That would've meant that I came home Christmas Eve and Christmas then flew back a day or two after. That's all I was able to get. But out of nowhere all of those plans fell through, no notice, no explanation, just nothing. This happened right around Thanksgiving and that was the weekend I found out Jacob wasn't doing so well. I am a firm believer in everything happens for a reason. I just don't like to think about *this* reason.
But in reality, this isn't about me. I mean what I say, I want my brother to stop suffering in whatever way God has planned. I'd like to think he gets to stay on Earth but I don't know. Then again, we were here in almost the exact same situation last year and we were blessed with an additional year we weren't' sure we had with him. Right now I have the "I don't know" mentality and that's not what I want. I want to have hope in that he's going to stay here. Not hope that his suffering will end soon and that be it. Truth is, I don't which one is right. Is it selfish of me to think that way? Or should I believe God will make it so he can live a full, long life? I have absolutely no idea. Or, is it totally wrong for me to even bring up the what if's? I know today is all that counts and here I am writing about the maybes. But to be honest, the more set backs we have with his feeding site, the harder it becomes to believe it's going to get better. I don't know if you call that losing hope. I don't think so. I have hope God is going to take care of my brother, I just don't know how. With that said, when you are in this spot, your mind wanders and you can't help it.
~I know people have it worse, much worse. I should rejoice that he's here. But that doesn't make anything less stressful. Hopefully next time I write, I have some hope and positivity to contribute. For now, I'm just looking for that Christmas star in the sky.
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