Monday, April 6, 2009

The tube comes up

Max tipped the scales today at 5.9 kilograms, or 13 pounds.

The next move on the reflux front was put into motion today, with the nasal feeding tube being pulled up from Max's intestine to his stomach (so now it is once again a nasogastric or NG tube). To start with, Max will receive continuous feeds through this tube over a 24-hour period, at a rate of 27 ml per hour. This is much slower than the rate he was tolerating only semi-well when he came to HSC over a month ago, when his feeding rate for bolus feedings was about 80 ml/hr. The idea is to compress the continuous feeds down to shorter time periods and faster rates, as has been tried before. The hope is that because Max is a little older and because his esophagus may have matured enough, the reflux will prove less of a problem. I think it is unrealistic to think that it will be completely gone. The question is just how much of a problem it is in terms of the frequency and volume of emesis, his level of discomfort, and any danger of aspiration. We'll see what the coming days bring. For most of today, Max did fine, tolerating PT well even while the feed was going in, and taking his usual 20-30 cc by mouth from the bottle. He did have some emesis toward the end of the day. [I'm beginning to think that the sight of my coat makes his reflux worse, because he often has emesis just when I'm headed out the door.]

In non-feeding news, Max had a great day. He was very alert and smiley. He enjoyed reading The Very Hungry Caterpillar, Brown Bear Brown Bear, and I Kissed the Baby; shaking his barbell rattle with each hand; reaching for Messrs. Fish, Octopus, and Moose; doing some abdominal/pelvic crunches; and taking a couple of good naps on me. He also had a great PT session, where physical therapist M. observed that he is getting better head control and is strengthening his abs. Abdominal strength is important for getting reflux under control, but it has been a catch-22 because doing ab-strengthening exercises also upsets his stomach and causes him to reflux.

When I walked in this morning, the nurses and therapists and assorted other HSC staff were all commenting on how HAPPY Max had been all morning. His nurse today, W., had not seen him since he was admitted to HSC. She was gushing about how much he had improved, and how much happier and more alert he seemed to her. I agree.