I wish I had better news to report........
Cohen's swallow study today was the same as the last one we had right before he was discharged at the end of April. He is still aspirating from the bottle directly into his lungs. He did not try to cough or protect his airway. We are disappointed, but are well aware of how much worse this could be.
Cohen's speech pathologist is amazing. She has always encouraged us even when the studies don't look great----she is going to let us try and start a little baby food. When I say a little, I mean 1 teaspoon per day for the next 3-4 months. This is not to add nutrition, but more to keep him from developing some sort of oral aversion. Since this is a thicker substance, he will hopefully not aspirate it. If he does sound congested or "junky" after, we will discontinue the baby food.
We will re-group in November with our ENT specialist, and just see where we go from here. I don't want to make assumptions, but I do think this indicates the left vocal cord is still paralyzed. I also think he will encourage us to do another MRI. That's just me guessing.
Regardless of the study today, Cohen continues to be growing and doing well in so many ways. He is such a sweet and happy baby.
We know this is just a tiny bump in the road in comparison to the ups and downs since Cohen was born. While still in the NICU, we dealt with good and bad diagnosis(s) everyday-- I think we were more used to it---or expected it more then since he was hospitalized. Now that he is home and away from all the constant medical drama, I seem to struggle to process negative reports more. I forget he is not just a "normal" (I hate that word=) baby-you would think the G tube would be a reminder, but it's just old hat to us now.
Anyway, it is what it is, and we can just hope and pray for the best.
Thank you for all the kind words and prayers. Love to you all.
so sorry to hear there wasn't any improvements :(
ReplyDeleteMy Faith has Grade IV aspiration/reflux...and has since she was born {at 24 weeks}.
We had her follow up VFSS yesterday & it finally showed some improvement. We just had to put her on a restrictive valve sippy cup which limited the amount of times she was admitted with pneumonia.
It may take a while...but it will get better!
I am so sorry! Don't feel bad for feeling frustrated. You just want the best for your baby boy! Who by the way is an adorable little boy! Many positive thoughts and prayers sent your way.
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