Pleural effusions and viruses

Nothing much has changed in this place since we left in May. All of my favorite URLs are still in the family room computer's browser history and familiar faces are everywhere. The food tastes the same and the stains on the floor haven't moved. It's like some miserable Hippocratic Groundhog Day.

The blood tests are back and they have ruled out protein-losing enteropathy and the white blood cell counts don't indicate pneumonia. PLE is a troubling side-effect of the Fontan and pneumonia is very dangerous for asplenics, so we are relieved. As a precautionary measure, they are starting Riley on a five day course of the azithromycin antibiotic, familiar to some as Z-Pak.

Last night they did a cursory echo on Riley which showed pockets of fluid around his lungs. They were described as "not impressive" in size by the cardiologist, and he indicated that the use of chest tubes isn't something they're considering. So they doubled Riley's dosage of lasix in the hope that the fluid will diminish. Recall that Riley's diuretics were reduced significantly after his last cardiology visit. The new dose is twice what he has been getting, but still half of what he got before the medications were reduced. They did a second echo this afternoon and the effusions are larger than they appeared yesterday. It's not clear if that was because they've grown or because the quick echo last night did not give the cardiologists a thorough look. In any case, it's not unusual for them to have increased since Riley has been on IV fluids for dehydration.

Riley's hydration levels have improved. He has been drinking juice and peeing regularly. He has also eaten some crackers and later some pita with hummus. It has now been about 24 hours since he last vomited.

The cardiologist believes that the effusions and illness might be unrelated. Perhaps the fluid has appeared in Riley's chest as a result of the reduced diuretics, and that he just needs a bump up. He indicated that if that was discovered in the clinic, they might just increase his lasix and monitor, or even do nothing and see if they continue to grow. But since Riley is sick, apparently with some sort of virus, the situation calls for closer monitoring. The plan for the next 24 hours is to make sure he is able to eat, drink and pee normally and return to normal spirits. On the cardiac side, they'll do another x-ray tomorrow morning to see if the effusions have diminished thanks to the lasix, or at least stabilized. If the effusions are worse, more diuretics will be given or potentially chest tubes inserted. We all want to avoid the latter since "waiting for chest tubes to drain" naturally equates to "six weeks of our damn lives we'll want to get back".

Nobody is speculating about when we might get to go home. I think we need to see the following happen before that's a possibility - (1) eating and drinking normally, (2) normal potty activity, (3) reduced/eliminated pleural effusions, and (4) a much more energetic Riley. We are making great progress on #1 and #2. As for #4, Riley is in better spirits today - playing with cars and watching baseball. But he's still obviously not himself. Earlier he said "I don't like it to be here in the hospital". He also immediately degenerates into a crying state whenever something is amiss - he slides down his bed, he drops a car, etc. For his part, Carter is fussy but adjusting. Suzanne went back to the house for a better stroller so Carter can sleep in something more comfortable than his car seat tonight.

We'll have more updates in the morning once we have results from the x-ray. The doctors are slow to see us because we're in the normal pediatric ward but are being monitored by pediatric cardiology. The cardiologists don't make their way down to us until they've rounded in the PICU and step-down units upstairs. That said, the lack of constant medical attention and electronic monitoring is a nice reminder to us all that we're just tourists this time around and will hopefully be home soon.