I’ve talked before about the great play dates that Parker has been having with the neighbor girls behind us. Saturday was another fun experience. Then came snack time. Parker’s doesn’t eat by mouth. I have to tell you that sitting at a table with friends who are eating treats while your Mom pulls up your shirt to bolus feed you ain’t as cool as one might think. Hello, feeding therapy.
Man, I hate that word.
Feeding therapy brings on it’s own set of adventures. Parker aspirates on everything. His FEES studies swear we are safe with pudding thickened to honey thickened foods, but my trust level on this is low. He passed swallow test after swallow test when in real life everything bite of food he took was going directly into his lungs.
Parker’s Travis C. Waiver allows him 10 visits with one of the best feeding therapy masters I’ve even seen. 10 visits sound like a lot, but with Parker’s issues it’s really not. My dream would be to have something along the lines of 2 sessions a week with me be watched as I feed Parker. I need the time with the therapist closely watching me feed Parker properly. I am convinced that Parker’s aspiration issues are directly connected to his pulmonary hypertension.
So I guess I have to revisit the question on how important it is for Parker to be able to ‘fit in’ socially and taking any chance of aspiration off the table so to say.
Parker will never be able to entirely eat by mouth. I’m good with that. But I would like for him to not always stand out so much socially. Plus, the kid so wants to eat.
We went to our first feeding therapy appointment on Tuesday. Did I mention I think this therapist is truly magnificent?
We worked with pureed prunes which is just between considered about a honey texture. He did great.
Damn, there’s that word again.
The next day Parker hacked up something a bit disgusting in his trach. With a tinge of the same color of what he had been eating the day before.
Now, this could have just been his spit he aspirated on that colored the mucus a bit brown.
It could have been something old from his lungs…….his nose is running and gunky and we know some of that finds his way into his lungs and he hucks it back out.
His heart rate last night was good. A sudden, out of the blue, high sleeping heart rate is one of the markers of an aspiration.
There is a huge part of me that says why in the world would I even be going in the direction of feeding therapy when Parker is so prone to aspirations.
One reason is the more practice Parker has in protecting his airway as he eats, the better. It will help him protect his airway from anything that make try and makes it way down.
Another reason is last Saturday during treat time with his friends. Wouldn’t it be nice if treats at Parker’s house were always something that he could eat too? Even if he were only able to take a bite or two?
One small step in making the Hero of ours more like his peers rather than different.
I’m going to be doing a lot of praying about this. There is no doubt in my mind that my Heavenly Father will provide me with the path to follow and the decision to make regarding what is best for Parker.
It may well be that if we are only able to secure 10 feeding therapy visits that the goal for Parker to eat by mouth in social situations simply won’t come to pass. Feeding therapy is a LOT different than OT or PT that I spend so much time on at home. I’m not afraid of my teaching him how to go down the stairs at home will wind up killing him the way mucking up teaching him how to eat could.
A bolus feeding during snack time at a play date might not be so bad. I can’t imagine Parker being a teenager and me lifting up his shirt to bolus feed him with friends around.
I’d LOVE to know how other Mama’s of tubies have handled these sort of situations. I guess not being able to eat with your friends is a small price for being able to still be around to have friends, eh?