Charlotte's Journey Home

Just a Regular Kid, Sort Of

Chyllous Effusion

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Yesterday the doctors finally found what seems to be the root cause of Charlotte’s discomfort and backtracking. Sunday’s echocardiogram was inconclusive, so we had a repeat yesterday. The good news was that there was no cardiovascular reason for the backtrack. In essence, the repair looks good and is holding. They did notice, however, that Sprout’s pulmonary valve was regurgitating (leaking) more than it had been, a concerning turn of events. While the x-ray didn’t show any fluid around the lungs, the leaky valve indicated that pulmonary pressure might be affecting valve function, so an ultrasound was ordered.

The ultrasound indicated that, indeed, a large amount of fluid had gathered around the lungs. This created high pressure in the lungs, probably accounted for her low oxygen saturation level, and may even have contributed to her bloated belly. There was enough fluid that the surgeons decided to re-insert bi-lateral chest tubes. As you can imagine, Philippe and I gasped at this. In the midst of what was, in our eyes, a crisis and major post-operative glitch, re-inserting the chest tubes seemed catastrophic.

The tubes went back in around 5 pm yesterday. Immediately, nearly 70 ml of chyllous effusion oozed out. In the collection box it looked like a melted creamsicle. What is chyllous effusion? Basically (which is the only way I can explain it), it’s a fatty fluid that is the result of Charlotte’s lymph nodes processing fat badly, in the wrong direction (i.e., into her system rather than out of her system). This happens because the surgery necessatitatd cutting through lymph tissue and the tissue malfunctions until it heals. Dr. Stewart (the surgeon who re-inserted the tubes) told us that the question isn’t really why this happened to Charlotte, but why it doesn’t happen to all cardiac surgery patients. In 24 hours, more than 170 ml have drained and Charlotte is back at her birth weight. She looks soooooo much better and her stats are great.

This complication means that she’ll be on the nasty ventilator for at least another week. We’re not sure how long the tubes will stay in, but they won’t come out quickly. And, Charlotte is officially on a fat-free diet for at least 6 weeks, or until the lymphs scar over. No breast milk—when she goes on formula it will be a fat free concoction (the name of which escapes me right now). So, I pump away (sorry if this is TMI).

It is good to have a diagnosis and to see the measures taken work so quickly. Such a relief. But, it is a bit of a bummer to know that she’ll be in the ICU for at least another week. We just want to bring Sprout home and start having a normal baby-centric life, rather than a hospital-centric life.

Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

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