Wednesday, May 16, 2012

Mixing it up...

Four years ago, we made the decision to have a g-tube inserted into Max's stomach.  This tube has saved us from countless hospitalizations, and has helped him gain weight when we were constantly struggling to get him to gain more than a pound in six months.  The first year he had a gtube, he gained 17 pounds.

We've had some bumpy roads along the way, but it's been a success to be able to give him his nutrition and medicine consistently through the gtube every day.

Because he's doing well weight, and growth wise...60 pounds and 4'6" tall...and because it's not cold and flu season, we're stepping out and trying something new with the gtube.

We have been working with Max's pediatrician and nutritionist to start giving Max blended foods in his gtube, rather than the milk based formula he has been getting since he got the gtube placed.

Right now, this is what Max's meals look like.

Four feedings of this a day.  It goes in over an hour straight into his tube, and nothing by mouth.

This is what we're transitioning to.



When I was talking to the nutritionist on the phone about the types of foods to buy, I noticed Max getting excited as he listened.  Steve told him that we could get bananas, and raspberries, and carrots, and lots of yummy things to put in his belly mouth.  He squealed and danced and told us "more more".

I think he remembers a lot more about eating than we've thought.  Feeding Max before the gtube was the one failure I ever felt when it came to Max.  I never felt like I was successfully performing my duty as mom when it came to feeding him.  He didn't have the oral motor skills, and I took it personally.  For nearly 5 years I took it personally.  Until I "gave up" and we got him the gtube.  I now wonder why it took me so long to give up and get the gtube for him.  It saved his life, and my sanity.

But, the one thing I dreaded most with the gtube happened, Max lost the ability to eat by mouth.  He can have tastes, and likes to taste food, but can also have quite a big gag reaction with food in his mouth.  So we eventually transitioned to strictly tube fed.  With only an occasional taste of food in his mouth.

I don't think Max would care if he never has to taste vanilla flavored formula again.  He hates it.  But, we're talking.

I felt so nostalgic buying the jars of food in the store the other day, I noticed myself getting teary.  He hasn't eaten "real food" in so many years.  And it used to be such a struggle.  Here I was grabbing jars of every fruit and vegetable they had.  No struggle, goes straight in the tube!

We will be getting the exact formula sorted out through the next couple of weeks and then do a weight check again.  Right now, we're only doing one feeding out of four with the blended food.  We will work up to half and half, then full blended diet.

We are working very closely with his pediatrician and nutritionist, who are taking his metabolic disease into serious account with each change we make.  But, in the end, if Max COULD eat by mouth, he wouldn't be drinking down formula every day.  We would have to watch his diet anyway, but, he would have a variety.

We have had a strong feeling that the milk constantly in his gut has caused a lot of his bowel issues.  He's been taking Flagyl monthly since the fall to get him more regular.  It basically kills all the bacteria (good and bad) in his gut and bowels, so he can have a good cleaning out of his bowels.

Tonight, after only two feeds (out of 8) of the blended diet, he proved my initial theory of milk contributing to his stomach issues with a giant voiding of things he was holding in.  We'll be careful to not get him too far in the other direction of stomach problems, but for him to be able to get rid of his potty business on his own, with the help of GOOD food, that was worth it the worry of "will this work"?

I think it will work.  We may not get it perfect right away, and he may not get completely off of formula, simply because we do have to monitor every number of calories, and protein, and every vitamin that goes into him.  But, it's a start.  And, maybe just maybe, we'll see him get a desire to eat by mouth every now and then.



bigsisd2hga said...

AWESOME! I procrastinated in getting Sherry's g-button in. I felt like that was saying the disease was getting the best of us. She did however end up able to eat by mouth again after a while. I'm glad Max can taste banana again :)

Junior said...

so excited for Max. Junior has been on the blended diet now for nearly a year and it has made such a difference. We quickly realized he does not tolerate any dairy products or corn syrup. We also started with the baby foods like you are and now Junior pretty much gets whatever I am eating for dinner. Good luck, love hearing about Max getting excited. Junior now loves to go grocery shopping with me.

CSIAmanda said...

this is awesome news I really hope it continues to help!!

Shachi said...

ooh real baby food - I love earth's best :). Hope this experiment is a grand success!

Lauren said...

How exciting! I hadn't even thought about the dairy effect - that will be great to see how his tummy appreciates the change.