It has been just about a year since Penelope had her first swallow study done, where we discovered the extent of her swallowing difficulties and subsequently had the feeding tube inserted. Over this past year, she has made a lot of strides. I had been working with her on her oral feeding- giving her purees, cereals, yogurt, etc, to taste, in the hopes that her swallowing would improve and she could start taking more and more by mouth. These feeding sessions were very hit-or-miss. Some days, she would be very interested in eating, and would take everything I offered her. Other days, she would gag or choke and vomit after only a bite, and I would have to stop the session. The feeding team following her wanted another swallow study to be done to see what progress she has made with her swallowing. This was done on Monday, and the results were not good.
Penelope can no longer swallow food with even the thickest consistency. She aspirates everything she tries to swallow. Even more troubling, she doesn’t have a protective cough reflex- she aspirates her food, and there are no outward signs that this has happened. She will appear happy and want more food, which will then go into her lungs instead of her stomach. And so we have now been given instructions that she is not to have anything by mouth- in medical terms, she is NPO.
To say I was shocked by this is an understatement. I was fully expecting the study to show an improvement in her swallowing, especially given how many other improvements she has been making. I’m worried that this swallowing regression is a precursor to regressions in other areas. It’s also really hard not to feel like this is my fault, somehow. Should I have been giving her more food to improve her swallowing? Less food? Could this regression have been avoided? And then of course there is the worry about the fact that she has been silently aspirating on an ongoing basis- what if her lungs are damaged? It is a miracle that she hasn’t contracted aspiration pneumonia. I am taking her to her pediatrician next week, and hopefully he can address these concerns with me.
Clearly, it has been a rough couple days around here. I am trying hard to stay positive and focus on the good: Penelope gets enough nutrition from the G-tube, so being NPO isn’t really a big deal to her. She didn’t contract aspiration pneumonia. The living room ceiling didn’t collapse. Penelope is happy and has made progress in other areas. I know all of this, and I am thankful for it. But I am still reeling from this unexpected blow, and I think it’s going to take a few days to get my balance back.