NPO

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.

Charlotte and Penelope at the soft gym

Charlotte and Penelope at the soft gym

Penelope likes playing with books

Penelope likes playing with books

Playing with her cousin, Juliana

Playing with her cousin, Juliana

Hair finally long enough for a clip!

Hair finally long enough for a clip!

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15 thoughts on “NPO

  1. I’m sorry you’ve gotten this difficult news.It’s shocking how life can throw us so many challenges at once. I suspect, though, that you’ve got it in you to handle it all in your own way, and quite well. Hang in there!

  2. Wow Julie, I can’t imagine what it’s like to ride this emotional roller coaster. You are such an amazing person, friend and mother. To say that you are an inspiration is an understatement! Your strength is mind blowing. Thinking of you as always and offering what ever you need. Sending love and hugs from the Knapps.

  3. My heart goes out to you Julie. You have two beautiful little girls. Wish I could give you a big hug right now. Sending lots of love to you and your family.

  4. Jacob is also regularly assessed for his swallow and we’re always told he seems fine… however he is constantly choking/gagging/throwing up and it scares the hell out of me. Just tonight he choked on something and then started trying to vomit. I’m sorry you had this news. I know from my own experiences i’m always desperate to get Jacob eating. I fear it won’t happen for us either as he just seems to have too many issues dealing with food. You must be so thankful she didn’t get aspiration pneumonia.

    • I just felt so blindsided by this. I was really hoping this study would show an improvement and we would be closer to getting her off the G-tube. I know it’s not the end of the world, but it is disappointing. And I am so thankful she didn’t get aspiration pneumonia, though I am worried that her lungs are damaged- she is constantly congested. I will be bringing all this up with our pediatrician next week. I hope can give us some answers, or at least some reassurance.

  5. Pingback: So Close! | A Mom of Steel

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