Chylo....what? Chylothorax

So one of the contributing factors that is extending our stay is a complication called Chylothorax.

Treatment includes a low fat diet (ironic, right? it was only a couple months ago we were pumping a high fat diet into his tummy for a different complication), and keeping the drainage tubes a bit longer to make doubly sure the excess fluid has drained properly. Jacob will stay on the new low fat formula for 4 to 6 weeks and have several follow-up X-rays to make sure fluid isn't building up on the lungs.

So here's the puzzle - switching formula on a baby is no picnic. Especially a G-tube fed baby who can't give you any intake cues. Doing it post op with constipating drugs on board and then throwing in a switch to oral pain meds that can upset little tummies....well... that's the complicated food and oral pain med transition. Try to solve that one, you know, while keeping Jacob as well hydrated and comfortable as possible as he recovers. Good grief.

Usually they don't like you to hold a baby until the drainage tubes are out but since we have this extended situation on our hands, the awesome nurses (nurses are so awesome) have tricks up there sleeve for securing the tubes safely enough to carefully hold him.

Jacob and I are very greatfull of that!

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In other news... cardiologist report today: Jacob's chest X-ray from this morning (they take chest X-rays every morning) looks beautiful and he sounds perfect. LOVE to hear that.

Jacob also had an awesome day. He got to sit up and we read lots of books, played with a lot of toys, and had lovely naps. What more could you want 5 days after heart surgery?

More about Chylothorax...

Cut and paste description below... (you are welcome to skip to my cut-to-the-chase version that follows the official description)

Chylothorax is a frequent and serious complication associated with congenital heart surgery, which occurs with an incidence between 0.5% to 6.5%. It may be caused either by injury of the thoracic duct, increased pressure in the systemic veins exceeding that in the thoracic duct, or a central vein thrombosis. The diagnosis is based on the milky or opalescent appearance of the fluid from the pleural spaces with high levels of triglycerides (> 110 mg/dl), proteins (> 20 g/L), and lymphocytes (> 80% of cells). These large losses of nutrients and immune cells put patients at risk of malnutrition, impair their immune system and may also lead to respiratory problems with the need of a pleural drain. Published treatment strategies which aim to decrease or stop the lymphatic lymph flow are: long chain fatty acid free, median chain triglyceride (MCT)-enriched diet, total parenteral nutrition (TPN), octreotide therapy), optimization of hemodynamics (recanalisation of closed central veins), or closing the leakages by supraphrenic ligation or pleurodesis.

Cut-to-the-chase version: This chyle stuff showed up in one of Jacob's drainage tubes for a brief part of one day. It hasn't showed up since but it doesn't matter. The fact that it did show up even once triggers the same course of treatment.

In this context his doctors would not label it as 'serious'. They consider it a nuisance more than anything. In the population of cardiac patients similar to Jacob they see it up to 50% of the time. Most likely caused by the thoracic duct getting bumped around during surgery and/or some imbalance of the whole fluids systems during surgery (any medical professionals reading this - I know that is a terrible description but close enough).