One day at a time

We started with a new doctor this week. So far I like him. He listens to us as parents, respects my son's boundaries (i.e. our want for slow and steady), listens to Sammy's nurses (and respects their input), and seems like a wonderful teacher with his students (something I hold high respect of).

Needless to say, we aren't making any big strides by any means. Our belly tube is draining into an ostomy bag to try to help heal our bowel perforation. So far there hasn't been a clear sign that his bowels have healed (i.e. poop), but neither the surgeons nor the doctor are too concerned. The expectation is that he will have the tube and bag probably for 10-14 days or until he either poops or it stops draining. We are on day four right now and it's still draining. It seems like there's more gunk in the bag today but my impression is that's because it's not leaking for a change.

The doctor wants to get Sammy off the jet ventilator, but he's respecting that it is going to take some time. Today, despite the RTs want to make small changes, the doctor wants to leave it alone. That's fine! They are making other changes so leaving his respirator alone makes sense to me. His PIP has gone back up but he has been handling somewhat lower FIO2 levels for a change, so I will take it! He hasn't shown any sign that his lungs are getting worse so they aren't really focusing on them right now. From what I've read though, I'm going to guess after 15 days on the respirator, we officially have BPD, a chronic lung condition. This means we will have to be extra careful around germs and smokers when we go home.

Today's focus is getting the little man some more calories and nutrition through TPN (IV nutrition) in the hopes we can get him gaining some weight. He had finally reached a few grams above his birth weight yesterday, but he's back down a few grand below today. We really are hovering at the 1lb 6oz mark for now. Here's hoping we can see more growth that's not solely fluids soon. Mommy will be very excited when he hits 2lbs!

The other focus today is getting him onto a better medication for his blood pressure. Because of his PDA (most likely), he is having low blood pressures. They have been treating him with dopamine, but that makes his heart rate high. Ugh! So today they will test his cortisone levels to see if they can put him on hydrocortisone instead of the dopamine. Here's hoping! His other blood work today will be his newborn screening, testing for genetic disorders that could affect his care. He had them done 48 hours after he was born, but they do them again at two weeks just to be sure. The likelihood of something coming up that we didn't know about after the 48 hour are quite unlikely, but I'm still crossing my fingers and toes!

Other than that, we are just moving along at our slow and steady pace. One day at a time.