New Process - tube feeding!

[SueOKW]

Hello! Since our visit last Spring, my son is now being tube fed. He was aspirating way to much, and we can still give him custard style ice cream and pudding, so he's pretty happy about it!

I haven't even given this a lot of thought - but it seems pretty simple, like our WDW trips will be even easier by using the baby care or first aid centers, right?

any input?

 

[dclfun]

It is pretty simple, quick, and easy. I use a 24/7 pump but bolus feedings are accomplished also without a hitch. Aspiration isn't fun...or healthy! Kathy

 

[SueOKW]

yes, poor guy. He has a very high pain tolerance. it wasn't till the swallow study that we saw what was happening.

 

[Talking Hands]

Glad you found the problem and could correct it. Also glad he can still enjoy ice cream.

 

[SueM in MN]

At least one of the young ladies in my DD's dance class has a G tube. It does make things easier in some ways and much better than aspiration!

 

[SueOKW]

He is so much happier and healthier. I was devastated when I was told we could no longer feed him regular food. It was such good quality time together..(until he started coughing so much!!)

I thought - ugh, one more label, one more thing he can't have..

The sun came back out when I heard about the ice cream consistency! That means pudding and lemonade pie and all kinds of good tastes.

I wonder.... will they still charge us for character breakfasts?

 

[SueM in MN]

Yes, there are lots of things you can serve with pudding texture. We use a lot of "Thick It" stuff at work to make things into the correct texture. And, many of the pudding texture things are the best tasting ones, so I'm sure you will still have lots of opportunity for quality time feeding him.

For character meals, they might not charge you or might charge an "Entertainment Fee". Tell them when you make your PS that you have someone who can't eat. I think that the entertainment fee is their policy, but I'm also quite sure that the server has some discretion (For example, even though youngest DD is an adult, and they know that when we make our PS, the server almost always changes her to a child before we pay).

 

[mamajoan]

SueM.. I immediately thought of "Thick It" too when I read op. Amazing stuff! I used to be thrilled for patients when they were allowed to eat again... if they used the Thick It to help decrease aspirations.



Have you used Thick It yet SueOKW?

If not.. you may want to ask an Occupational Therapist or Speech Therapist on how to best use it for your son. Once you learn how to get the right consistency .. new foods will be able to be swallowed and enjoyed.

Best wishes! Enjoy all your mom time!

 

[mommie2angels]

SueOKW, what made you check about the possibility of aspiration and do the swallow study? I am asking because I watch one of our dds very closely because of the possibility of aspiration and I wonder if I am missing something sometimes. I am so glad you found out about it before it got too bad. I can totally relate about the quality time while feeding your ds.

 

[SueOKW]

Thick It was something we used when we realized he was having problems with juice. I will use it more now for the times we sneak him things!

RE: study? My son had the most wonderful teacher - she worked her way through college working with severely disabled kids - so she had a lot of experience. She had concerns as did the school nurse. He was also not gaining weight like he should have. I think i called my case manager at my insurance company to get approval for the study.

Now that I know better it seems to me that you can't miss aspiration. We got so used to his coughing that we didn't really realize how bad it was. I feel terrible i let it go as long as i did... he's much happier now and sleeps through the night!!!