Another busy day for Rowan: the PICU team swapped out his CFM for an EEG, he had an ultrasound of his heart and another of his liver, had another chest x-ray, had another lumbar puncture, had some blood drawn for more testing, and got so annoyed with all the poking and prodding that at one point he yanked out his own feeding tube (it’s back in now).
Here’s what we know now:
- Rowan’s heart looks fine for a baby of his age. No cause for concern
- The blood clot on his liver is a totally expected occurrence due to the UVC lines he had in his umbilical cord in the NICU. It’s only a partial blockage, not a total blockage, and it should be reabsorbed by the body in a couple of months. No cause for concern.
- In the first 4-5 hours of monitoring today the EEG didn’t show any seizures. It’s also showing more typical background brain activity for a baby than we were seeing in the NICU. So that’s good, but obviously this is still a big one in terms of cause for concern.
- The big concern is that Rowan has pneumonia, probably picked up during his two-week stay in the hospital, but it could have come from aspirating something at home at some point. He’s on a bunch of antimicrobials/antibiotics to get it under control, with the hope that some of the bloodwork and the lumbar puncture will come back with a better idea of what specifically we may be looking at, whether it’s getting worse or better, etc. As I mentioned in yesterday’s post, the guess is that the pneumonia put extra strain on his body which then caused some recurring seizures on Monday (as opposed to both the pneumonia and the seizures being related to another underlying cause), but there’s little chance that they’ll be able to prove that conclusively until and unless they figure out what is causing the seizures.
Amber and I are doing as well as can be expected. The days are long and stressful, but we know Rowan’s in the best possible place that he could be to fight through the challenges he’s facing right now.