news about Kenny
Some of you have already heard this news through Facebook and twitter, but I wanted to post it here as well.
Six or more weeks ago,my mother to see a G.I. specialist because he was vomiting so much.The G.I. specialist blew her off completely and refused to run any of the tests she asked for. After consulting with the nurses who manage Kenny's home care, the family altered the diet Kenny is fed through his G-tube and the vomiting decreased in frequency and severity. Note that when I say "decreased in frequency and severity" what I mean here is that it was amazing and awesome when the poor kid went four Whole days in a row without vomiting once.
Then on Friday last week Kenny was taken to the emergency room because he had been vomiting since 1 AM, and a lot of the vomit had blood in it. The ER doctor was appalled that the specialist had not taken my mother seriously and ordered a battery of tests -- blood tests, x-ray, and CT scan, -- all of which came back normal. He sent Mom and Kenny and Kenny home with strict instructions about watching him carefully in bringing him back immediately if there were any serious problems, most emphatically including more bloody vomit. Kenny's condition went up and down over the weekend, and my mom fought again with the G.I. clinic about scheduling an endoscopy. This morning, after Kenny vomited three times in six hours, mom took him back to the hospital where they admitted him after he produced more bloody vomit for them. After another battery of tests, this time including, at long last, an endoscopy, we have a few answers.
our assumption going into this was that Kenny had a bleeding ulcer, and that the way to treat this would be to move his feeding tube from his stomach to his lower intestines for a few months while his stomach healed. Unfortunately, what it looks like now is that his stomach has completely stopped working -- during his entire endoscopy his stomach had absolutely no peristaltic action which is the action of the stomach necessary to digesting food.Not being able to digest food means, of course, that you throw it back up. And this of course means that he is not getting enough calories, and that he has literally been slowly starving -- we discovered today that he has lost 10 pounds in the last six months or so, bringing his total body weight down to 66 pounds. Keep in mind that my brother is 26 years old and probably in height a little under 5 feet tall. In other words, he lost more than 10% of his body weight in the last six months. They don't know why his stomach has stopped doing this peristaltic action -- in some cases it happens as a complication from diabetes, which Kenny does not have, and in some cases it might be the result of a virus, although all of his blood counts look normal -- no elevated white blood cell counts, or anything like that, which would signal an immune response to infection. At any rate, the most depressing part of this is that the doctors do not expect his stomach to start working again. He will have surgery tomorrow or early Friday morning to install a feeding peg in his lower intestines,at which point we will at last be able to start getting enough calories in him again. He also won't be nauseous all the time anymore, which he clearly has been for the last little while. However, this also means he won't be up to take food by mouth anymore and that is a hard hard thing to think about. Food by mouth has only been something that we did for his pleasure since he got his feeding tube, because we simply couldn't get enough calories in him by mouth anymore, but it is hard to think about him losing that source of pleasure.
He is not in any immediate danger right now, but I am very sad and very angry. Even though I don't think there is anything that the medical profession could have done to stop this outcome, if they had paid attention as they ought to have he would have suffered less. I don't know what else to say about these emotions, but I am feeling both of them strongly and vastly. since it is not a medical emergency at this point I do not have any immediate plans to travel back to Colorado, of course that could change. My current plan is just to go back at Thanksgiving, saving any other trip for a more clearer emergency, since I have jobs I have responsibilities to, etc.
I don't need anything in particular right now,nor does the family,except for your prayers and healing wishes and hugs when you see any of us. As always in moments like this, we request that you pass along any good jokes you find as you find them.
Six or more weeks ago,my mother to see a G.I. specialist because he was vomiting so much.The G.I. specialist blew her off completely and refused to run any of the tests she asked for. After consulting with the nurses who manage Kenny's home care, the family altered the diet Kenny is fed through his G-tube and the vomiting decreased in frequency and severity. Note that when I say "decreased in frequency and severity" what I mean here is that it was amazing and awesome when the poor kid went four Whole days in a row without vomiting once.
Then on Friday last week Kenny was taken to the emergency room because he had been vomiting since 1 AM, and a lot of the vomit had blood in it. The ER doctor was appalled that the specialist had not taken my mother seriously and ordered a battery of tests -- blood tests, x-ray, and CT scan, -- all of which came back normal. He sent Mom and Kenny and Kenny home with strict instructions about watching him carefully in bringing him back immediately if there were any serious problems, most emphatically including more bloody vomit. Kenny's condition went up and down over the weekend, and my mom fought again with the G.I. clinic about scheduling an endoscopy. This morning, after Kenny vomited three times in six hours, mom took him back to the hospital where they admitted him after he produced more bloody vomit for them. After another battery of tests, this time including, at long last, an endoscopy, we have a few answers.
our assumption going into this was that Kenny had a bleeding ulcer, and that the way to treat this would be to move his feeding tube from his stomach to his lower intestines for a few months while his stomach healed. Unfortunately, what it looks like now is that his stomach has completely stopped working -- during his entire endoscopy his stomach had absolutely no peristaltic action which is the action of the stomach necessary to digesting food.Not being able to digest food means, of course, that you throw it back up. And this of course means that he is not getting enough calories, and that he has literally been slowly starving -- we discovered today that he has lost 10 pounds in the last six months or so, bringing his total body weight down to 66 pounds. Keep in mind that my brother is 26 years old and probably in height a little under 5 feet tall. In other words, he lost more than 10% of his body weight in the last six months. They don't know why his stomach has stopped doing this peristaltic action -- in some cases it happens as a complication from diabetes, which Kenny does not have, and in some cases it might be the result of a virus, although all of his blood counts look normal -- no elevated white blood cell counts, or anything like that, which would signal an immune response to infection. At any rate, the most depressing part of this is that the doctors do not expect his stomach to start working again. He will have surgery tomorrow or early Friday morning to install a feeding peg in his lower intestines,at which point we will at last be able to start getting enough calories in him again. He also won't be nauseous all the time anymore, which he clearly has been for the last little while. However, this also means he won't be up to take food by mouth anymore and that is a hard hard thing to think about. Food by mouth has only been something that we did for his pleasure since he got his feeding tube, because we simply couldn't get enough calories in him by mouth anymore, but it is hard to think about him losing that source of pleasure.
He is not in any immediate danger right now, but I am very sad and very angry. Even though I don't think there is anything that the medical profession could have done to stop this outcome, if they had paid attention as they ought to have he would have suffered less. I don't know what else to say about these emotions, but I am feeling both of them strongly and vastly. since it is not a medical emergency at this point I do not have any immediate plans to travel back to Colorado, of course that could change. My current plan is just to go back at Thanksgiving, saving any other trip for a more clearer emergency, since I have jobs I have responsibilities to, etc.
I don't need anything in particular right now,nor does the family,except for your prayers and healing wishes and hugs when you see any of us. As always in moments like this, we request that you pass along any good jokes you find as you find them.