Even More Complicado

It was a cranky night with Sir Bubs. What looked like pain at various points in the night, now looks like constipation, so they are throwing an arsenal of solutions at the problem - Miralax upped to twice a day, Colace, prune juice, the old fashioned pediatric enema. It's hard to be a constipated tough guy.

On a separate and more important note, Bobby has developed a fairly serious complication from the surgery. They've been monitoring the drainage from his chest tubes, and noticed that the chest tube on his left side was draining fluid that was white and milky, unlike the clear yellow fluid draining from the right chest tube. They believe the milky drainage is a sign of chylothorax, which is the accumulation of chyle in the lung space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). Symptoms of chylothorax are related to the amount of fluid present and the rate at which it accumulates and may include fatigue, shortness of breath at rest or on exertion, heaviness, and discomfort on the affected side. If left untreated, chylothorax is associated with considerable morbidity and mortality.

So, they are testing the level of triglycerides in the left chest tube drainage. If the labs find strikingly higher triglyceride levels and confirm the diagnosis of chylothorax, the treatment is to move Bobby to a different formula, such as Pediatric Vivonex or Tolerex, for the next 6 weeks or so. The alternate formula would contain very low levels of fat to help the malabsorption issues. Because Bobby is already on a specialized medical formula (Elecare) that is 100% amino acid based due to his inability to tolerate milk protein and his severe GERD, I'm nervous about switching to a different formula. The new formula is even more expensive than Bobby's current liquid gold (and will cost about $900 per month, versus $400), but, the alternative is much more daunting.

If he can't tolerate the specialized formula, they would move to something much more drastic - like complete bowel rest and TPN (total parenteral nutrition) - or IV nutrition. Not a very great option for an active little guy.

For now we're thinking positive thoughts, and if he does have chylothorax, hopefully either of the two medical formula options will do the trick.

The surgeon mentioned Bobby will also be in the hospital until the beginning to middle of next week, as we wait for the chest tubes to drain.