Category Archives: eating

Practicalities of the Chylothorax Diet

fatfreeThe best thing about being forced to eat a fat-free diet for chylothorax is that it is always temporary.

The worst thing about being forced to eat a fat-free diet for chylothorax is everything else.

If you are coming to this page from a web search for “chylothorax diet,” then you already know that you — or the person you’re caring for – has a leaking thoracic duct in the chest leaking a fluid called chyle, largely made up of dietary fat. If left untreated, chyle could fill the chest cavity and make it very hard to breathe. Because thoracic ducts usually heal on their own, simply waiting for that to happen is often enough treatment. While you wait, your diet has to be fat-free.

When my 8 year old daughter had to follow this diet after cardiac surgery, we were flummoxed. So many foods have a gram of fat in them — too little to be bothersome to almost any other diet, but twice as much as was allowable for her at the time. As we had before with other difficult, medically-required restrictive diets, we dug deep and did a lot of research. Here are some tips that I hope will help others manage this crummy, unpleasant, high-stakes diet. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

The Sound of Water

glassofwaterMy eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.

As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.

Finally, I asked. “How does swallowing feel, Sunshine?”

She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:

“It feels so different!”

“How so?” I asked.

“When I swallow, it goes down like ssshhhhhwwwwwwww!”

“And what was it like before?”

“It was like ccchhhhk, ccchhhhk, ccchhhhk…”

With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.” Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Terrible Conversation, Part II

conversationGiving a child bad news hurts on every level. Integrity tells us to be honest, realistic, straightforward. Nurturing tells us to soften the blow. Getting the combination right means compromising both.

When we had to tell our daughter Sammi just before her fourth birthday that she had been diagnosed with an inflammatory disorder called eosinophilic esophagitis, we did it in an age-appropriate way that, thankfully, also forced us to simplify the problem for ourselves. The new diagnosis meant a host of food restrictions that would change over time, but we focused on the first six weeks that would exclude dairy, eggs, soy, nuts, and wheat. I wrote about that conversation in a previous post:

We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

At that young age, she was hardly able to comprehend it. Sammi ate what we gave her, followed the rules, and over the course of the next three-and-a-half years, endured more than a dozen endoscopies. She did everything we asked. She even participated in a barium swallow study and a strange and very uncomfortable CT scan without ever asking us why.

Sometimes, I feel horribly guilty that she never asked why. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Handouts for Doctors

Have you read my chart?Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather