It’s been a while since we had a check in for Otto’s feeding schedule and I was elated when I sent in his current progress and they wanted to see him right away. We have been slowly cutting back about 10-15% of the g-tube fed volume each time and yesterday was the first time we were able to cut back by a great amount.
Currently he gets three tube feeds during the day (morning, noon and dinner) each after he eats orally. At night he gets a larger volume to make up for any potential lost calories. I was so bummed he got sick before this appointment because he didn’t want to eat while he was down which caused him to lose a little weight. Regardless they were still happy with his progress and we did one of the greatest cut backs we’ve ever done.
Otto is to the point where again he knows we are in the doctors office and gets very upset and unsure of the situations at hand. We did our best to get an accurate height and weight before just having a consultation. It took a lot of convincing but he finally calmed down enough to tell the dietician how he “doesn’t like it” and is “ready to go, Mama get my things”. drama drama drama.
In a few days when Otto is feeling 100% we are going to cut back from 3 to 1 during the day and maintain the night feed. When we have our cardiologist appointment next month we are going to get a good weight and see if we have to go back up or continue to cut back.
I’m not going to lie, this is super scary and exciting all at the same time. To think that we could be approaching the end of our feeding tube journey blows my mind. It’s been almost three years of measuring weights, formulas and changing out tubes and buttons not to mention a few trips to the ER when we were getting the hang of it.
It’s been a slow and patience testing process but I’ve never been so proud of my little man. He proves time and time again that things will happen when he is ready and in his time. If I could go back in time I would tell myself at the start of this journey to BE PATIENT things will come. Read more about Otto’s food aversion here.
I know we are not out of the woods yet but we sure are seeing glimpses of the other side. Thank you so much for all of the thoughts, prayers and encouragement friends. It means the world.