Sideways News
"I have some good news and some sideways news." I love our GI in Boise. I love that he doesn't call it bad news, just sideways. Anyone can handle sideways news, it's the bad news that really messes with you right?
Without further ado...All the major tests came back NORMAL!!! Hooray right? Don't get me wrong, it's good but at the same time, doesn't offer any insight into my sick kids. He was able to confirm that they have a bad bacterial overgrowth in their intestines. That's the sideways news.
C-Diff came back negative but from the pictures he saw of Sam's most recent colonoscopy, he said he is 99% sure he has the bacterial overgrowth. The little ulcers all over are classic for the disease which is when a bad bacteria takes off and destroys the good bacteria. Because Spencer's symptoms are so close to Sam's he thinks Spencer has the same thing. One major obstacle is their poor immune system. Their body is not mounting a fighting response so the bacteria is just running rampant.
The boys will be starting an outrageously expensive and by that I mean over $1000 each child, at least that's what I've been told to expect and it is not easy to get. We will start them off for just 10 days. The doctor said we should see a 100% improvement in the boys and if not, then back we go for more testing. I am praying this works. Our pharmacy doesn't have the drug readily available so it will take several days for them to get it here.
In the meantime, I have been bleaching all the hard surfaces in our house. I know we have been living with this for over three years now, but I am hoping that by killing all the germs now and a daily cleaning with bleach, we will get rid of this horrible bacteria once and for all. It's a ton of work and my hands are raw tonight. As I was cleaning, I thought back to when I brought Sam home from the hospital when he had C-diff before. I was paranoid. The nurses had warned me that it was extremely contagious. Sam had to sleep on an plastic air mattress for months. He had his own special towels that I had to wash in bleach. He had his own bathroom that I bleached down every time he used it. I washed his clothes separately in hot water. It was quite an ordeal, one I hoped back then to never have to revisit.
I am not going to go quite to those cleaning extents but I am being very careful. I just want to know that I have done everything possible to help them get better and keep Shelbie from getting it. Hopefully, her monthly transfusions are keeping her somewhat protected. We need to be vigilant in making sure they take all their pills and never miss. That's so hard when they are gone to school for lunch. They don't always remember to take them. They are going to have to work on being more proactive in this area.
Well, that's how our world is turning these days. I am neither upset nor overjoyed. It is pretty much what I had expected. Hopefully, tomorrow, I can finish my bleaching and pick up a big supply of Clorox wipes and paper towels.
Without further ado...All the major tests came back NORMAL!!! Hooray right? Don't get me wrong, it's good but at the same time, doesn't offer any insight into my sick kids. He was able to confirm that they have a bad bacterial overgrowth in their intestines. That's the sideways news.
C-Diff came back negative but from the pictures he saw of Sam's most recent colonoscopy, he said he is 99% sure he has the bacterial overgrowth. The little ulcers all over are classic for the disease which is when a bad bacteria takes off and destroys the good bacteria. Because Spencer's symptoms are so close to Sam's he thinks Spencer has the same thing. One major obstacle is their poor immune system. Their body is not mounting a fighting response so the bacteria is just running rampant.
The boys will be starting an outrageously expensive and by that I mean over $1000 each child, at least that's what I've been told to expect and it is not easy to get. We will start them off for just 10 days. The doctor said we should see a 100% improvement in the boys and if not, then back we go for more testing. I am praying this works. Our pharmacy doesn't have the drug readily available so it will take several days for them to get it here.
In the meantime, I have been bleaching all the hard surfaces in our house. I know we have been living with this for over three years now, but I am hoping that by killing all the germs now and a daily cleaning with bleach, we will get rid of this horrible bacteria once and for all. It's a ton of work and my hands are raw tonight. As I was cleaning, I thought back to when I brought Sam home from the hospital when he had C-diff before. I was paranoid. The nurses had warned me that it was extremely contagious. Sam had to sleep on an plastic air mattress for months. He had his own special towels that I had to wash in bleach. He had his own bathroom that I bleached down every time he used it. I washed his clothes separately in hot water. It was quite an ordeal, one I hoped back then to never have to revisit.
I am not going to go quite to those cleaning extents but I am being very careful. I just want to know that I have done everything possible to help them get better and keep Shelbie from getting it. Hopefully, her monthly transfusions are keeping her somewhat protected. We need to be vigilant in making sure they take all their pills and never miss. That's so hard when they are gone to school for lunch. They don't always remember to take them. They are going to have to work on being more proactive in this area.
Well, that's how our world is turning these days. I am neither upset nor overjoyed. It is pretty much what I had expected. Hopefully, tomorrow, I can finish my bleaching and pick up a big supply of Clorox wipes and paper towels.
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