KKI-Day 21

I am so excited to write this post! Hudson has done absolutely fantastic this week. At the steering committee meeting last Thursday, I was told that the team feels, after having worked with Hudson for 2 weeks, that he can be 25-50% weaned from tube and bottle feedings by the time we leave. Our discharge date was set for October 18. One of the big goals the team has for Hudson is to get him off that bottle, so they are focusing very heavily on cup drinking. If he learns to even drink his Elecare formula from the cup, they will consider that as counting towards the weaning goal, because it won't be intake by tube or bottle. So far he will let them put the cup up to his mouth, but isn't taking anything from it yet. Cup drinking is worked on in speech and occupational therapy. In feeding sessions, something finally clicked for him over the weekend. He closed his mouth and swallowed, at first taking several minutes to swallow but over the past couple of days he is swallowing much faster. This program is ABA based, so it relies heavily on a reward system for acceptable and desired behaviors. For Hudson, the reward is getting to watch a Mickey mouse DVD. If he doesn't swallow within 15 seconds, the DVD goes off. As soon as he does swallow, it goes back on. It sounds so simple, but it's something we have never been able to make him do. I truly believe the total immersion and excellent therapists of this program are the difference. So as much as I despise the inpatient stay, I think the value of the feeding program and therapies is immeasurable. He is on puree consistency, and the feeding team is placing the bite towards the back of his tongue, applying downwards pressure to elicit a swallow, with a Nuk brush. He isn't able to handle a spoon yet, the therapists said he doesn't have the proper tongue movements to move the food back yet, but they'll continue working on it. So far variety of food has not proved to be an issue, he doesn't seem to enjoy the food but also doesn't seem to dislike it. A new food is introduced every fourth session. So far he's eaten peaches, pears, green beans, applesauce, a blended up chicken nugget, mashed potatoes, and blended chicken and rice. All the food is blended to a smooth puree consistency. He is up to 2 oz per session, and they will up his intake a half ounce per every fourth session as long as he continues to do well. Today I was told that he is up to about 130 calories intake in feeding sessions, so we were able to cut his overnight feed down by one hour. On Friday he will have a texture assessment done to see if he can handle junior textures, like regular applesauce. He is doing awesome! After the misery of the first few weeks here, I can now honestly say that I see why this is the number one feeding program in the country. It's working!