Day 4

Yesterday turned out to be a bit of a better day for Lucas. We had a fabulous nurse on Monday night who I think helped to regain his trust. He actually smiled a few times. Later in the day after his afternoon nap we got to get him in a wagon and take a walk. Today we are hopefully going to make it to the play room or the pre-school.

We did get some news yesterday about a small bump in our road. Yesterday morning the nurse noted a slight cloudiness in Lucas' left chest tube drainage. On rounds, they didn't seem overly concerned but decided to have it tested. Unfortunately, the fluid is what they call chylous, meaning high in fat. So, Lucas has a chylo thorax. Essentially what is happening is his lymph duct near the site of the surgery was either stretched or nicked during his operation. This particular part of the lymph system is associated with fat/protein drainage. So essentially Lucas has lymph (fat/protein) drainage into his pleural space where his chest tube lies. The big bummer is that this type of drainage does not respond to diuretics like normal drainage does. So, you just have to let it runs it's course. The one "treatment" for it is limiting fat intake. He has been put on essentially a no fat diet, he can only have 5g per day.

This diet will have to continue for at least six weeks at home, after we get discharged. Unfortunately, kiddos with chylous drainage often have to keep their chest tubes in longer because of the "slow leak" they experience. So, we are just trying to be patient with the situation. It is just hard because he did so great during the surgery, so great in recovery, seems to be bouncing back very well...and then you have something like this that is going to set us back a bit, and will take longer to resume "normal life" after discharge.

They also are limiting Lucas' fluid intake to 960ml/day in order to limit the build up of fluid in the pleural space. We were warned prior to the fontan that the chest tubes will be the most frustrating part, and indeed that is what is happening. He is looking better, feeling better, finally eating fully...and now he has to have no fat and very limited liquids. It is hard because this whole time when talking about the surgery we have been saying that he can order whatever he wants, that they have anything he would want to order. We were trying to put a positive spin on the hospitalization. So, when he asked for pizza last night, the fact that he got a hard piece of cardboard chicken didn't fly to well.

The fluid limitation is hard because both of our kids drink water all day long. And now that Lucas is coughing a little bit when he needs to clear his lungs, it really hurts him to cough. He likes to hold his little cup of water and take a sip when he's coughing. But, we have to count every ml that goes in so we'll need to be careful.

Yesterday on his wagon ride he started coughing and coughing. He was just crying asking for water. Who denies a three year old water? I get the reason, but again his age makes this all really hard and he doesn't need anymore things to be sad about.

Overall, yesterday was more positive, just some tough news to swallow. It sounds like the chylo thorax is not that well understood as to what exactly causes it and what it takes to fully stop it. But, they have found that limiting fat intake seems to be the key in getting it to stop. When we resume a normal diet at home he will have to have xrays to make sure he isn't getting another chylous effusion.

One day at a time. But, the most important thing is that the surgery went well. Lucas seems to recovering from that very well. Now we just have to do what we need to do to get these chest tubes out and get him feeling better.