Fighting back

As I mentioned in yesterday’s post, Colin is back on the vibrating ventilator (which he last was on at two days of age). And he really does not like it. You may wonder how a baby who shouldn’t even be born yet and can’t make any noise because of the tube in his throat can let you know when he doesn’t like something. Trust me. When Colin is unhappy, everyone knows.

For the ventilator to work properly, Colin should be lying flat on his back. He has apparently discovered that if he arches his back, the ventilator doesn’t vibrate as much. So he spends a lot of time arching his back and putting his hand on the ventilator tube and pulling. He also thrashes around and gets a very angry looking expression on his face.

However little Colin likes the experience of being on the ventilator, it seems to be working better for him. He has been desatting far less often, and his respiratory rate has stabilized — both good signs. The NICU primary doctor also discontinued the antibiotics the weekend doctor started Colin on. Having read more of Colin’s chest x-rays, he doesn’t believe the spot on Colin’s lung is an infection. Rather, he feels it is related to the collapsed lung.

Since he is off the antibiotic, we can now start Colin on his feeds again. Tonight at 9:00 he got his first milk since last week — a whopping 3 ml, but at least we’re starting again. As long as he tolerates the feeds, they will keep increasing the amount he gets. This will help him feel better (full tummy) and, we hope, put on more weight.

It also frees us to start fighting the lung problems that continue to plague Colin. If all goes well, on Thursday we may be able to start Colin on the steroids to try to clear up the lung issues so we can get him off the ventilator. The steroids are not without risks — both of affecting his brain development and of not working. But we know the ventilator is causing damage to his lungs and he clearly is not happy on it, so we have decided the potential benefits outweigh the risks.

The treatment, if successful, will follow a two week cycle. During the first third of the cycle, Colin will be given the drugs. If those appear to have worked at clearing up his lungs, the second two thirds of the cycle will be spent weaning him off the ventilator.

If, after the five days on the medication, it looks like it has not helped, we will stop and wait until Colin is bigger and try again. At the five-day point we also could see that it is starting to work, but hasn’t done enough yet. If so, the doctor may decide to continue the drugs a little longer before starting the weaning process.

I don’t know about anyone else, but I’m voting for option 1 — success. John and I really do hope the treatment is effective (and on the first try) so that we can wean Colin from the ventilator and focus all of his and our energies on getting him bigger and able to pass some of the other milestones so he can catch up with his sister.

And speaking of Veronica, she continues to do mainly well. She now weighs 4 pounds 12 1/2 ounces and is now getting 40 ml of milk every three hours. The doctor started her on medicine to address the reflux (which is back again as the most likely suspect in her increased number of bradys), and it seems to be reducing the number of extreme bradys she is having. We’ll take that as good news for now.