The infection scare seems to have been a false alarm. All cultures are still negative. She's showing the elevated temperature and tachycardia again today but we're starting to believe that those are more symptoms of discomfort for her. They cut her fentanyl (pain med) in half yesterday but have been administering fairly regular boluses since then because she keeps getting restless. Amusingly, what really seems to work is not the scary meds but Tylenol. When they give her a dose of that she almost immediately goes into the good ranges. Hopefully we can start controlling the pain with that (which can be given every 6 hours) rather than the versed, fentanyl and atavan boluses. Of course, what we're really hoping for is that in the near future she'll just start feeling better and have less post-surgical pain.
One of the reasons they lowered the doses on the meds was to wake her up a little so she would start breathing on her own and not letting the ventilator do all the work. She's at a slightly larger volume now and the vent its set to 32 breaths/min, down from 42 yesterday. She's now going through spurts of doing a whole lot of breathing over the vent and then letting it do all the work for awhile. It seems like she gets worn out and just needs a rest sometimes. At some point they're going to start weaning the NO (necessary to relieve the pulmonary hypertension) and getting that dose down, combined with her regularly doing enough breaths on her own, will be our ticket to getting off the vent.
The echo looked good so they stopped the milrinone. With that change, she's now just on the fentanyl and versed plus some glucose, TPN (food replacement), and lipids through ivs.
She started feeds today. During surgery they placed a transpyloric nasogastric tube, which means it runs into her nose and down past her stomach to the beginning of the intestines. This allows her to start digesting colostrum (and eventually milk) while bypassing her stomach, which avoids the gastric reflux that's very common with these kids. She's currently receiving 1ml/hr on a continuous drip, just to start coating her intestines and waking them up. This will gradually be increased to full feeds (150ml/kg/day) before they start moving the tube up into her stomach.