Little Bugs Are Gonna Get You - Well, Hopefully Not!!

Thankfully, things haven't been as crazy today, but they have continued to be hard. This morning, once again, I got up, got dressed in the work clothes, but thought better about putting on make-up. I had every intention of going to work, but needed to wait for rounds to make up my mind completely. It was a good thing I didn't put on make-up this time...Mason decided to spike a fever - 101.1. Not a good sign. Add to that, with huge support of the ventilator, oxygen, and nitric oxide, he just wasn't doing as well as we would expect - really only saturating in the low 90's. He just looked sick. And this was all before rounds started. So much for going to work today!

He got some tylenol and once they did rounds (again with the cardiologist saying let's get the trach ASAP), they decided that they'd better re-start the antibiotics and get all kinds of samples to see if Mason has an infection. I think his nurse was in here for a good hour getting all of the samples - urine, blood from 3 locations (his Swan - pulmonary artery pressure central line, his PICC line and a poke in the leg just in case it was something systemic), and mucus from his lungs. Haven't yet heard if there's anything growing in the cultures, but Mason's fever seems to have already broken. Hope it stays away!!!

Well, overall, they have tried to leave Mason alone today. Other than this morning's events, Mason's nurse has tried to stay out of the room as much as possible and they've done a good job of bundling his treatments and moving him when they need to. He has responded well with a burst of the sedative and hasn't needed really any bursts of the paralytic except when we have had to do big things. He's been a champ - I think he realized that his Mama and Papa needed a little reassuring that today was going to be ok.

With a small drop in his saturations and a small elevation in his pulmonary artery pressure, they have been able to turn down some of the help that they were giving him. He is down to 10 of the nitric oxide - down from 20, and down to 80% oxygen/20% air going into his lungs. This is a lot better for him in the long run as those 2 gases can be toxic in high doses. We are encouraged that there hasn't been a lot of change, but still very very worried that he seems to be staying the same or getting worse at times. We have tried feeding him off and on, but it seems that with the medications, nothing's moving. So, he is getting fed entirely via IV (called total parenteral nutrition - TPN). This is not idea, but until he gets moving and off of the pain medication, nothing's going to move in his gut. Yet another reason for the trach. We are always a step away from any of a number of complications that can happen to a patient as sick as he is and really cannot wait for the trach surgery so that he can start to come off of the paralytic, the sedatives, and the pain medication and start moving around some. It looks like the trach is still on for Wed, with the weekend coming up and a holiday on Monday, looks like there's no way to do it sooner. Please continue to pray that the fever was a fluke and that he continues to tolerate everything they are doing to stabilize him and prepare for the surgery.

I've included a picture of Mason's set up in the PICU. I thought some might want to know what he's going through.