Hanging Out at the Hospital Again

Owain is sitting here at UVa Children’s doing puzzles after actually eating a good lunch. I am guessing the nurse will come in to check on us any minute now. I think he has some meds due soon, and with any luck they will come in before he gets sleepy and takes a nap.

We have been here since last Friday. You would think that with all the sitting around waiting that we do that I would have more time to sit down and write a quick update. Hospitals are such busy places, even when nothing is going on.

After his Fontan on the 24th and 6 days later we were home! It was awesome to be home, but still a bit much to handle, even after his Glenn we were in the hospital for 9 days. Being home so soon after surgery made me a bit nervous, but he seemed to be recovering quickly, and was running around the house with his sister within a few days of being home. On day 6 of being home, which was last Wednesday, he started showing signs of having fluid building up around his lung. When he was active, I noticed his breathing was more shallow, he was telling me that his chest hurt and could not get comfortable at night when sleeping. He flip-flopped all night long, and didn’t eat too much. His activity also slowed down, and he spent more time than the previous days kicked back on the couch. I also noticed that his fingernails were getting that bluish tint again.

He changed quickly enough that I would have made an appointment with peds cardiology, but we already had one scheduled for Thursday anyways. His echo and ekg showed this heart function was great, but he had pleural effusion, which is fluid building up around his right lung.

We came back on Friday to drain the fluid and monitor his drainage and here we are. On Friday we got settled into his room on the floor, and then moved to the PICU to put in a chest tube. First thing, they drained 300mls of fluid, which is about 14 ounces I think, which seems like an awful lot of fluid to have pressing against his lungs, stomach, and heart. He has had the chest tube in since then, and was draining a small amount, about 20-40 a day until yesterday when he drained 150mls first thing in the morning. Since then there hasn’t been much drainage at all, back to 20-40 for the rest of yesterday, and looking to be about the same amount again today.

Starting last Friday when he first got the chest tube, the tube was on suction. We have been able to go off suction for an hour or 2 to go for wagon rides, and for our Mended Little Hearts meeting. This morning they took him off suction altogether. Which is a good sign as far as I am concerned. He will have the chest tube without suction for today and tomorrow, and his next x-ray is scheduled for Thursday. From there we will have a better idea how much longer he needs it. That also means that we know we will still be here for several more days at least.

When they drained the fluid last Friday, they also tested for chylothorax, which is when the fluid is a cloudy, milky color and has fat, white blood cells and protein in it. He had low amounts of chyle, and has been on a moderate low-fat diet since Saturday. Since then I have noticed that the color of the fluid is getting clearer. Chyle can be serious, but at this point it is a low enough amount that we don’t have to go all out no fat, but it is better for him to be on a low fat diet and no fat doesn’t hurt either.

So that is were we are at right now.

Even though he as the chest tube, he can still go down the hall to preschool, which is for a few hours, 2 times a day, and we do our best to get in there to play with sand, paint, play with toys, and not feel like he is stuck in a hospital room 24 hours a day.

Class is now over and I have to go get him!