Wednesday, January 7, 2009

Evening update (Wednesday 1/7)

Tonight after we put Felix to bed, Carolyn opened the fridge and found a home-made shepherd's pie that had somehow wound up in our house. I know it was a shepherd's pie because it said so in a neatly hand-lettered label on a piece of masking tape on top of the container. We both had vague and conflicting memories of who made it and how (and when!) it came into our house, but we couldn't quite remember the exact details. Nonetheless, we heated it up for dinner. Mystery cook, your shepherd's pie was delicious, and saved us a great deal of trouble tonight. Many thanks, secret benefactor.

The NICU team--not a group of people given to false cheer--has assured us that Max's hydrocephalus appears to be resolving itself. However, the recent acceleration in his head growth has us naturally quite worried. It does no good for our habit of magical thinking to have Max's hydrocephalus resurge at precisely the same moment we had started to relax about it. I hope that Max is just having a growth spurt, a growth spurt that just happened to start with his head.

This morning I talked to Carolyn and she had only continued bad news to report about the evolution of Max's breathing problems. But when we spoke again in the afternoon, she was more upbeat. Dr. B. confirmed that Max has chronic lung disease, which appears to be more a label for the constellation of symptoms afflicting Max than a description of a specific underlying physical process. Dr. B. thinks that Max's lungs were damaged by the ventilator and oxygen support he got while very young. The good news is that, according to Dr. B., Max only has a mild case of it. Further, she expected that Max would not need to go back on the cannula, and she characterized the run of trouble Max has had this week just a "temporary setback".

Dr. B. also debunked my "buffer stock theory of breathing", where I thought that perhaps Max's lungs were only able to supply him with, say, 95% of his required oxygen. But, I thought, Max had built up a little extra buffer stock of oxygen while on the cannula. When the NICU team took the cannula away on Sunday, Max was able to draw on this buffer to augment his insufficient respiration for a couple of days. But by Tuesday, he had run down his buffer, and was struggling to get by on just his inadequate breathing, hence the tachypnia and retraction. Dr. B. assured Carolyn that Max has sufficient respiratory capacity for all the normal tasks a baby has to get done in a busy day: sleeping, eating, waving arms and legs around, pooping, being cute etc. Max, however, has a relatively small margin of extra capacity, so when stressed out, say by illness or fluid retention, it's more likely that he will experience respiratory distress.

As if to confirm Dr. B.'s diagnosis, Max perked up in the afternoon. In fact, Carolyn judged his respiratory situation to be good enough to get him out of his crib and play with him. Max was alert -- "bright eyed" -- and interested in the world around him. Carolyn got him to do three reps of our favorite new exercise: the head lift. Carolyn holds him sitting up, with his head flopped back. She then tickles his chest or back, and Max raises his head and brings his arms up. Given Max's enormous head, this is quite an effort. Dr Kz., the developmental specialist, gave Max a poor grade because his limbs were stronger than his trunk--these exercises strengthen his trunk. Max also sucked on his pacifier voluntarily. Speech therapist S. warned us not to force the pacifier on him, because it might make him pacifier-averse, so now give Max an infant Miranda warning when we try to interest him in a pacifier ("You do not have to suck on this pacifier...").