25 May 2011

Feeding Clinic Care Conference

We had our Feeding Clinic Care Conference today.  Parents of Feeding Clinic patients typically have a Care Conference with the staff every two weeks while in the hospital.  So, we had one today and will do so again in two weeks.

I have to admit Brian and I left a bit disappointed.  We had really felt like since things were going well and we had heard that Bennett was "right on track," we were looking at leaving the clinic with Bennett off a majority of his tube feed.

Unfortunately, this may not be the case.  At this point, one and a half weeks in, Bennett is on 15% of oral feeds.  While the goal is 75%, the team cautioned us that we would be hopeful to get him on 50% of oral feeds.

But what was disappointing was how far back Bennett's mechanical eating skills are behind.  He is currently eating with the skills of a 9 month old.  At this point, the Feeding Clinic staff is working with him on "clearing a spoon" (aka eating from a spoon in an efficient way that all of the food goes in the right place in the mouth) and drinking a significant amount of fluid (he drinks only 1 ounce at this point).  This will likely be the team's goal until he leaves in 2.5 weeks.

However, in order for Bennett to eat appropriately for his age, he still has to be introduced to new food variety, introduced to new food textures and taught how to chew correctly.  That means he's still quite a good way away from learning how to eat effectively and being able to eat 100% by mouth.

We weren't all that surprised that Bennett will need to continue speech therapy but we are surprised how far away we are from Bennett eating well.  So, it's a bit disappointing.  Maybe daunting is the word.

Knowing Bennett has future challenges ahead regarding his health and Cystic Fibrosis, we had really hoped to have helped him nip this issue in the bud.  But, it looks like we're in this for the long haul, maybe the long long haul.

We have alot of reasons to be hopeful.  Laura, the child psychologist here, said Bennett is extremely compliant so he has shown no behavior issues that are making his eating difficult.  And we will have the hospital has a huge resource once we go home to work with our current therapists.

We are so fortunate to have recognized these issues and jump starting his oral feedings in any way.  Our hope is that Bennett will be able to eat 50% of his foods orally by the time we go home.  It would be really fabulous if he could eat orally during the day and through the tube at night.

So, while we are disappointed, we are trying to keep our perspective to the present moment.  If we look into the future, we can feel overwhelmed.  It's better to just appreciate where we are in the moment.

So, thankful moment #22.) I am thankful for learning more about Bennett's feeding issues and being able learn how to address them.  We are incredibly blessed to be at one of the best places in the US for feeding issues such as this.  No matter how far along we get during our time here, I am simply thankful for all of the success we experience during this short period.

1 comment :

  1. I know the outcome sounds like it might be does seem that Bennett is learning fast. I guess he is starting from the beginning so I think he is rocking it...and so are you mama! Keep going!


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