It is said that you should spend part of the morning praying. It is quality time with God, for He is the only one who knows what the day holds for you. If I had known all that was going to happen today I would've hid under blankets and stayed there. What happened today was the cherry on top of the stressful sundae. I know, I'm sure that sounds totally lame but that's all I've got.
I walked downstairs at noon only to see that Jacob's nj tube was out further than it should be. It had dislodged and we didn't know how or why. Well, actually the nj tube is held by a specific kind of tape (the name escapes me). And it sucks, this tape doesn't hold anything down. It only holds down when it doesn't get wet. But the tube is placed so it is in between his upper lip and nose, so that's inevitable.
The big, crappy, part of the day is that the tube wasn't in the jejunum anymore. We noticed Jacob's tube feeding coming out of his open feeding site. That means, the tube was in the stomach and not his small intestine. The nj tube was put in Thursday. It is only Saturday.
My dad and I took Jacob to the hospital to get the tube placed back in. Recall in one of my previous blogs I said that Jacob hates this particular procedure and just cries. As soon as we got to Radiology and entered the x ray room he started crying and he wouldn't stop. He knew exactly what hell he was about to go through and he couldn't do a thing about it. What the doctor did was since the tube was already in his stomach he didn't want to pull it out and put a new one in. So he took a thin wire and put it through the tube. That enables the doctor to control the movement and direction of the tube by making it more rigid. Keep in mind though, it's not simple. Jacob has Prune Belly Syndrome so his anatomy is different (so they say).
I stood by Jacob's head and saw the doctor push the tube far up his nose and then pull it out and push it in and pull it back out. He had to have done this 50 times or so and every time Jacob became more and more upset (with good reason might I add). You can do a lot to me; break my heart, belittle me, punch me in the stomach 20 times, stick a needle in my neck, but watching my brother go through this misery is the worst thing I have ever experienced. Nothing~ no stomach pain, asthma attack, or biopsy will ever compare to what I saw today. In addition, this x ray machine is connected to a computer monitor and that brings up instant pictures of Jacob's abdomen. It makes a beeping noise after every picture taken. I watched the screen after every beep for several minutes and you could see the tube moving. The best way to describe it, is when you try to thread a needle. If the end is frayed and you try to push it through, it bends upwards and doesn't go through. That's what I saw on the x ray. The doctor would push the tube in and then when he tried to get it in the jejunum, it would just bend around another part of the small intestine.
It got to the point where the doctor said he wasn't sure he could do much better than what he got. He said that that's not where he wanted the tube and he wasn't sure it would hold but, he didn't think he'd be able to move the tube where he really wanted it. At that point I did something I was taught not to do; beg to God. I prayed over and over and over again. I didn't look away from Jacob because I didn't want to be a coward, he doesn't need cowards in his life. He's the strongest warrior I know. So I just kept asking God to please help him. But Jacob's cries were getting louder, his frustrations were increasing, and I kept seeing that tube being pushed in and pulled out. I didn't think about it not working; I kept thinking I know God is here, I know he's going to make this right. And sure enough, a few moments later the doctor said he got it; he got the nj tube placed better than ever before. By that I mean, this is the doctor who usually places Jacob's nj tubes (he did it last Thursday) so out of every time this was the best. Then, after it was in and they taped it, Jacob stopped crying. He literally calmed right down like nothing had happened a few minutes ago.
The hardest part of today was the moment we were all saying "sorry" to Jacob. What the hell does sorry do? Sorry you have to go through this….sorry you're in pain….I can say sorry all I want but I can't stop what has to be done and I can't stop the pain. The nurses can make as many sad faces as they want because they feel bad but they and I aren't going through this. Faces and words don't change anything. Jacob and I have a new thing where when I sing him a song, he pats my hand continuously. I tried that in Radiology and it worked for about 2 seconds. I even got the rest of the radiology team to sing "Jingle Bells" with me but Jacob didn't care. And why should he? He didn't ask for this tube to be dislodged; he didn't ask for his feeding site not to heal; he hasn't asked for any of this.
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