Moving forward

The bolus feeds are continuing to go well. For his last bolus feed today, I increased it to 135 ml/hr for an hour (from 130 ml/hr). That's only an increase of a teaspoon over an hour, but I can tell it's affecting him. He is swallowing a lot and sighing a lot. For him, that usually means his tummy doesn't feel the greatest. It is going to take a long time to get to 200 ml/hr.

I need to talk with our new nutritionist. When we last met, she said that X's weight gain needs to slow down or we will be dealing with the "opposite issue". I took that to mean obesity. At the same time, she also increased his feeding tube calories to 1400 from 1280 when he is eating well, and to 1600 calories when he is eating 100 calories or less. That doesn't make sense to me. I feel like he is going to balloon with these new numbers.

The most recent weight gain of X's happened while he was eating 300-400 calories on top of the 1280 he received through the feeding tube. It seems to me that, X will start decreasing his oral intake, or he will gain a ton of weight in a short amount of time. Yeah, I'll have to email her to find out what range of calories she would like to see him getting between both the feeding tube and oral intake. This is why I almost cried when I heard the nutritionist who has been with us from the beginning was gone.

I have also noticed that X is really not consuming any meat since increasing the calories on the feeding tube. I should also ask her how much protein he is getting now and at what ratio. He typically loves his mea. I suppose there will be an adjustment period with the new nutritionist. I am not known for adjusting well to any changes. This will be another area of personal growth for me I guess. Oh yay.

X is way too active for the feeding button. Good grief. I can't tell you how often I need to clean up stomach content because of leaks. The leaks happen because he doesn't let the feeding tube slow him down. Which is a good thing, but it's messy.

Speaking of stomach content, I was wearing a yellow-green sweatshirt the other day, X looked at me and said, "That is disgusting Mom!". When I asked him what was disgusting, he replied, "Your sweatshirt! It looks like stomach acid!". Nice. He was right though, it was the color of the stuff that he has seen come out of his tubes. I don't think I'll be able to wear that hoodie again.

That's about all that is going on around here. Hopefully we can just s-l-o-w-l-y keep increasing the amount of the blouses and get to where we need to be without any troubles.




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