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View Full Version : Post Surgery Weight Loss: A HUGE problem!



MitoMom
04-09-2010, 10:03 PM
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.

rohrer01
04-10-2010, 12:13 AM
Barb,
I don't have a lot of expertise in the medical field and haven't had surgery, yet. But have you discussed the possibility of an NG tube during your son's recovery? Just a thought.
Best Wishes!

Vali
04-10-2010, 12:39 AM
Hi Barb, When my appetitie was crappy after surgery, I had Isowhey protein shakes or smoothies with fruit. They went down easy and also contain all the vitamins and minerals, however after reading the fat, protein, carb breakdown in your post, I suggest visiting a health food shop and asking them for a supplement based on your sons requirements. (Check with your Med Pract if this is OK). Make sure that you specify that he needs to retain his weight or even gain some - not lose weight!. Best wishes.:)

MitoMom
04-10-2010, 06:43 PM
Thanks for your suggestions.

I'm going to bring up with the ortho when we see him on April 28.

Getting John to tolerate an NG tube would mean totally knocking him out which they will be doing during surgery so that may be an idea to suggest. Then they'd have to restrain him from pulling it out post op. He is developmentally delayed (the politically correct term for mentally retarded.) He's going to regress from acting like a 12-14 year old down to 4-6 years old because of the surgery. Reasoning with a 4 year old in a 20 year old body is not an easy task.

The other alternative it TPN--total parental nutrition. A friend who has a sister disease to John's mitochondrial disease suggested that last night on another forum. That has mixed reviews. It's administered very similar to an IV through a central line which I think they will be using during surgery. The bad thing is TPN can be really hard on livers for some people. Livers can be a problem anyway in mitochondrial disease so they are VERY careful in using it in selected cases.

The last most invasive choice is a g-peg. They make a hole in the stomach through to the outside and place a valve gizmo so that a tube is connected to it with an external pump that pumps in the liquid formula into the stomach. I know of a few kiddos and adults with this. It bypasses any problems the mouth and esophagus have with swallowing and pushing the food down.

The more I write the more I know I've got to bring this up with ortho and anesthesia April 28. I'm guessing they are going to point me to the dietition. I've already talked to the dentist about the canker sore John will get due to the stress and he's given us a rinse to use starting a week before.

Thanks for the ideas.

Karen Ocker
04-10-2010, 07:32 PM
There is a special feeding called hyperalimentation I was given between my 2 surgical stages. This is given in a large neck vein and is prescribed specifically to give high nourishment when a person needs calories for healing and cannot eat.
I am assuming your child is having his procedure in a large medical center with experience dealing with your child's condition. This is no time for a hospital to "learn" or muddle through your child's care.