Two Steps Forward, One Step Back

I know, I know...get used to it already. We've been here for 17 days and each one of them has been part of the both the peaks and the valleys toward improvement. Yesterday and today were no exception.

Thankfully, the fever Mason had on Sunday broke by morning and we've had no sign of it since. Given that he has continued to chew on his towel like it's going out of style, the fever must have been from teething.

As we expected, yesterday did not see many changes. The new attending pediatrician talked about changing Mason's fluid intake if his labs continued to look good today, but didn't want to change anything yesterday. The dietitian did make a change at our request to the timing of Mason's feedings so that he had a bit more time in the morning to digest the night's worth of food. Otherwise, no changes.

Last night and today we noticed a change in Mason's oxygen need, though. He started to need about 0.5L more than usual during the day and during the night. When the doctor listened to him, his lungs sounded wet again. In other words, he's retaining some fluid again. Most likely, since Friday when they decreased his lasix, he's been building his fluid level up again - depsite the reduction in fluid intake. So, it looks like Mason will need a little more lasix than we originally thought. We just have to find the right combination and dosage of medications. So, we gave a burst of lasix today, repeated the chest xray and here we go again! Hopefully, the set back is just temporary and Mason will return back to baseline by tomorrow.

The best news of the day, though, was the sedated Echocardiogram (ultrasound of the heart). Mason did great and was able to get through it with just some medication in his g-tube. We were able to avoid an IV start and full sedation. After about 30 mins with the medication in him, he was clearly becoming "intoxicated." It was so funny to see him loopy, and giggly. He kept Bill, myself, and the nurses overseeing the procedure laughing through the whole thing. The Echo showed the same as the previous ultrasounds - very mild persistent pulmonary hypertension. His heart is staying stable and not having to work harder than before or contributing to the fluid overload. Great news!