My son (20) is scheduled for kyphosis surgery in June because his lung function is declining due to the kyphosis and the progression of his mitochondrial disease. He is in the 10th percentile in weight. He has NO body fat stored due to how his body processes fats (not good). He's on a low fat (<15%), low protein <15%, >70% high complex carb diet. Fasting in John's world is a not allowed due to the breakdown of fatty acids into toxic wastes his body can't get rid of. It messes up his biochemistry really bad and then cascades into other even nastier stuff.
I'm really worried this is going to be a huge problem post surgery. We already know from his wisdom teeth extractions, muscle biopsies and ear surgeries that when he's in pain, he won't eat as much. We saw last fall what one medication did that affected his appetite significantly. He ate less than he did as a toddler. It took a month for everyone to figure out what the problem was. I was the one who figured it out, not the 3 drs. They agreed with my theory and took John off the medication.
I've read the posts about post surgery weight loss including your clever names: The percocet weight loss plan! Where do I sign up for me?
The mitochondrial dr is ordering IV's of D10 (dextrose 10%) instead of saline. It's part of John's Emergency Room protocol they follow when he's in metabolic crisis. Lactated Ringers is NEVER given to a person with John's muscle disease because they tend to have high lactic acid levels anyway and that just makes it worse. They will be checking his glucose levels and administering Insulin as needed.
Any suggestions on what you ate post surgery when your appetite was in the tank? He can't afford to lose any weight. We work too hard to keep the weight on him.
I'm really worried this is going to be a huge problem post surgery. We already know from his wisdom teeth extractions, muscle biopsies and ear surgeries that when he's in pain, he won't eat as much. We saw last fall what one medication did that affected his appetite significantly. He ate less than he did as a toddler. It took a month for everyone to figure out what the problem was. I was the one who figured it out, not the 3 drs. They agreed with my theory and took John off the medication.
I've read the posts about post surgery weight loss including your clever names: The percocet weight loss plan! Where do I sign up for me?
The mitochondrial dr is ordering IV's of D10 (dextrose 10%) instead of saline. It's part of John's Emergency Room protocol they follow when he's in metabolic crisis. Lactated Ringers is NEVER given to a person with John's muscle disease because they tend to have high lactic acid levels anyway and that just makes it worse. They will be checking his glucose levels and administering Insulin as needed.
Any suggestions on what you ate post surgery when your appetite was in the tank? He can't afford to lose any weight. We work too hard to keep the weight on him.
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