Word Of The Day - Chylothorax

Chylothorax is the accumulation of chyle in the pleural (lung) space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). It occurs after injury to or obstruction of the thoracic duct. Injury to the thoracic duct during cardiovascular surgery occurs because of its proximity to the great vessels (aorta and pulmonary artery) in the chest, where the duct crosses from right to left. Most cases of chylothorax after surgery for congenital heart disease have occurred after non-open heart procedures, mainly subclavian-pulmonary artery shunt procedures, resection of coarctation of the aorta, and ligation of patent ductus arteriosus.
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. An initial trial of conservative therapy is indicated, since spontaneous closure can occur. Removing chyle from the pleural space is best accomplished by chest tube placement for continuing draining. This allows full re-expansion of the lung, which closes the lymph connection (fistula) by the lung’s compression effects. In order to maintain adequate nutrition while reducing lymph flow, it is recommended that the diet be changed to limit the fat source to medium-chain triglycerides (fats that are directly absorbed from the gut into the blood stream without having to go through the lymph system). Alternatively, the patient may need to take nothing by mouth and receive total parenteral nutrition (TPN) by receiving all nutrition through an IV or central line for many weeks. Since flow of chyle is minimized only when the gastrointestinal tract is completely at rest, others prefer to stop oral feedings altogether. Surgery is a more aggressive solution, but is generally used if the conservative efforts have not been successful. ( definition courtesy of tchin.org ).

This is the latest complication for Elias. They started to notice this over the weekend and confirmed today. The good news is that this fluid is a normal part of the body and not infectious, it is just not getting distributed properly. It is manageable, however the doctor we talked with on Sunday told us that it is a LONG process. He told us we could expect 4 weeks or more for this to clear & drain. It also means his chest tube is in indefinitely. This was a little deflating to hear only because it emphasises how long it could be before we will get to hold Elias, let alone take him home. That is probably the hardest thing to deal with so far, wanting to hold our child and not being able to. Not to discount watching him in obvious discomfort & seeing all the tubes & IV lines, no parent wants to watch their child go through all this. We are so proud of him, how hard he is fighting, how well he is handling things, & how he seems to be leading the doctors to find these problems. He is AMAZING, INSPIRING and so deserving of all the love, thoughts and prayers. He is already becoming a favorite among several of the nurses. They are always commenting on how great he is, that is nice to hear.

Today he was in obvious discomfort/pain. The poor little guy got an IV burn (a deep purplish looking bruise) yesterday in his foot. They removed the line and replaced it, unfortunately in a vein in the top his head. This should be a temporary location. It was tough to watch him at times knowing there was nothing we could do to ease him, talk about feeling helpless! Even with all of this he would still find a way to look up at us and you could imagine the smile. He is definitely very aware of when we are there. We only stayed for several hours today because when the doctor came in to talk to us , she commented on how tired we both looked. We didn't realize it showed so much especially since we were making an effort not to spend "too much" time at the NICU, because we are no good to Elias if we are not taking care of ourselves. So we took her advice and retired earlier to get some much needed rest. The doctor was very upbeat about treating the chylothorax and told us we just need to take things one day at a time. They put him back on Dopamine last night for blood pressure, but they had almost completely weaned him off by 5pm today. They did boost his oxygen concentration again up to 35%, but had lowered again to 31% by 5pm. The doctor told us that he is starting to show slightly stronger vitals, so that is another bit of good news.

We decided to take some video this afternoon. Several people have requested some more. We are glad everyone is enjoying the updates, pictures, & videos. We know many of you wish you could be here, but are unable to and this is a way we can share this together. It has actually been very therapeutic to bring you these updates. It helps us to digest and make sure we comprehend all that is going on during this emotional roller coaster. The video is just a collection of short takes throughout the afternoon. Like we said earlier there are times he looks uncomfortable, but he was being his normal adorable self. We hope you enjoy.