A trip to the apnea/pulmonary clinic

Carolyn took Max for a long-scheduled visit to the apnea/pulmonary care clinic at Children's today; this is one of the many specialists that Max is seeing. For the most part, Max put on his usual charm offensive. However, Max has a disconcerting habit of crying if he sees another child crying. For a long time we thought he was just copying his older brother, but having seen him around other babies, Carolyn confirms that he seems to pick up their distress via baby telegraph. Needless to say, there are plenty of unhappy children at Children's.

The monitor to which we attach Max every night has been recording his breathing and heart patterns, as well as any alarms, time between the alarm and its reset, and other indicators of parental diligence. We initially viewed the monitor with suspicion because we knew it would eventually disgorge all of our secrets to the pulmonary care team, but then we forgot about it.

I'm happy to say that the pulmonary care team read the monitor's memory and gave us high marks for consistent use. They also told us that the few times the alarm went off were false positives: Max's heart or breathing patterns may have tripped the alarm, but they weren't real episodes of bradycardia, tachycardia or apnea. As a hospital baby, Max has always slept peacefully through any manner of noises, including his monitor's alarm. Had Carolyn and I been hooked up to monitors over the past couple of months, however, they would have told a different story. There's nothing quite like being catapulted out of Lethe's sweet embrace by a klaxon announcing that your child needs emergency care.

The pulmonary/apnea team tried to talk us out of continued use of the monitor. After all, they said, Max has gone 43 days at home without an incident. We, however, aren't so sanguine. Max hasn't had an episode..yet. I was surprised to hear that we had been home for 43 days. I don't know if it feels like just a single day or an eternity, but there's something nice and concrete about the number: 43 days.

Max is suffering from what Carolyn calls the "family cold." We've all got it to some degree or another. Dark theories abound regarding who among us brought in the infection. For political reasons, we've decided to blame the only member of the family who can't talk, although we don't have a theory where Max might have gotten it. To some extent, Max's cold symptoms made his lung function appear temporarily worse. Nonetheless, the pulmonary team doubled his dose of diuretic in order to keep his lungs clear of fluid. We go back in a month for a further checkup.

Going without a cannula (again)

Though bathtime is usually in the middle of the night, Max got a midday bath & shampoo today (for reasons that are still not clear to me) from Nurse M. This happened just before I arrived, and I was sorry to have missed it. We haven't seen Max get a bath since one time in early November. They took off Max's cannula today at noon to see how he would tolerate it. Max's nurse today seems to think that he has things too easy and that it is time for him to start experiencing new things ("peel my grapes" she said as she walked by him today). I suspect the cannula move was her idea. During my visit this afternoon from 1:30 - 5:30 p.m., he seemed to be doing well breathing on his own: no bradys, just one apnea (according to the monitor, but I was holding him and I could swear he was actually breathing), and his usual pattern of quick desats into the 80s and occasionally the high 70s. His typical sats were in the mid-90s, and his respiratory rate seemed pretty stable, with little retracting. Our phone call into the NICU tonight continues good news on the cannula-weaning front, as Max's breathing pattern continues to be pretty stable. This is the 4th effort they've made to take him off the cannula, so maybe the 4th time is the charm.

Max spent his time with me mostly sleeping, though he did wake up for some calisthenics and to receive his public (our friend Margaret stopped by for an afternoon visit). He seemed to tolerate the activity pretty well, only turning beet-red a few times. Tonight's head circumference measurement is the same as last night's (37.5 cm) and the nurse reports that his head feels good. I think a head ultrasound is scheduled for sometime this week (the last one was just before Christmas).

Max's new year's resolutions: (1) keep head circumference growth stable and hydrocephalus in check; (2) breathe better, and (3) get the ND tube out and learn to eat from a bottle.

The ABDs of the NICU

In the NICU, babies are said to have "A"s and "B"s. In addition, I think they should also be said to have "D"s.

A is for apnea, babies' disquieting habit of forgetting to breathe. Max, and many other preemies, are reminded to breathe by being giving IV caffeine and having air blown at their face (hence Max's continued use of a nasal canula). Many a nurse and doctor has taken us aside to explain that "caffeine is a stimulant". Seven years of grad school taught us that, thanks very much. But if the idea of giving your infant a big cup of coffee every morning strikes you as odd, welcome to the NICU.

B is for bradycardia; in infants, when the heart rate falls below 100 beats per minute. There doesn't seem to be a good explanation for why preemies have bradycardia episodes (or "bradies"), but it seems related to their underdeveloped brains; the episodes are correlated with apneas as well. Usually, Max comes out of apnea/bradycardia episodes on his own, or with gentle prompting.

D is for desaturation; NICU patients have a red light bulb taped to their feet. This measures (sort of) the oxygen saturation of the tissues near the surface of the skin as far as I can tell. This saturation can drop because the infant is experiencing an "A" or "B", or simply for no reason at all that I can divine. Interestingly, Ada's sats were pretty good until the end, but direct measurement of the oxygen content of her blood showed severe oxygen deprivation, so the sat monitor isn't perfect.