Monday, February 9, 2009

Max's second report card

Both sides of the NICU continue to run at full capacity. The new attending for the step-down (or "minimum security") NICU, Dr. R., started rounds this morning and, faced with a room jammed with babies, asked that they be kept private so she could quickly get up to speed on her many charges. Thus, Carolyn wasn't able to participate in rounds this morning; I'm sure the beleaguered residents breathed a sigh of relief. Dr. R. and Cj had a meeting of the minds later in the day.

Max had a big day today, with Dr. Kz, the developmental specialist, giving Max his second report card. It's been more than six weeks since his first report card, on which Max did not do well.

Because of the timing of Max's feeds and Dr. Kz.'s schedule, Carolyn and Kz. decided to stop one of Max's feeds so Kz. could assess him. But because Max had a full belly, Kz. forwent a full evaluation of Max's muscle tone and motor control in order to spare him gross physical effort, e.g. from lifting his head, that might cause him to vomit.

Instead, Dr. Kz focused on Max's ability to follow toys and faces, as well as his ability to regulate himself (a sign of autonomic nervous system development). Max did quite well on these so-called "social abilities", such as turning towards voices, following faces and so forth. Dr. Kz. did notice a bias: Max was more likely to turn to the left, follow objects and voices to his left, etc. In this, Max is simply following the country in my opinion. In the past, Max had favored his right side, so this appears to be something we can work on, as opposed to the result of organic damage from his asymmetric head bleeds.

Max was quiet and alert for most of his assessment. However, he did get a little red and agitated at one point. Dr Kz adduced this as evidence that Max still had some way to go in developing his autonomic nervous system. However, she thought that his ability to self regulate was much improved from her previous visit.

On Max's motor skills, Dr. Kz. satisfied herself by asking Carolyn whether Max was always stiff or always loose. Carolyn replied that he will sometimes stiffen, stretching his arms and legs, but that he also spends a lot of time relaxed. This seemed to satisfy her.

Dr Kz. also wanted to know whether Max smiled, and, if so, whether it was in his sleep or to us. This dislodged a two-year old memory from when Felix was this age. My reading at the time revealed that babies practice expressions in their sleep. Max does indeed smile, but only (so far as I've seen) when he's awake. Maybe he's done practicing?

To summarize:
Social skills: Very good (although he should work to correct his leftward bias)
Autonomic nervous system: Much improved (although still some way to go)
Motor/tone: Incomplete (but evidence is good)

Speech therapist S. came at 3:00 PM, displacing the physical therapists. Max was extremely groggy and did not do particularly well. S. was only able to very slowly get Max to swallow his Maalox, nor was Max interested in sucking on a nuk pacifier or S.'s finger. S. tried to get Max to take 10 ccs of milk by mouth; she was only able to convince him to swallow 5 ccs of it. She noticed from his throat movements that he doesn't quite have his suck-swallow routine right; he gets too much air with each mouthful of food. S. emphasized again the importance of not trying too hard to get Max to use his mouth; this runs the risk of generating a negative association and thus, the dreaded oral aversion. S. advised us to stop trying to feed Max at the first sign of distress.

Max didn't do well feeding by mouth today in part because he was already full of milk and just wanted to sleep. I have a crackpot theory that Max will only really get the hang of suck-swallow-breathe if he's properly motivated; that is, if he's hungry. After all, this is how other babies learn to eat. Under my theory, we should delay Max's feeds until he swallows some milk. Carolyn advanced this theory to S., who didn't denounce it outright; but S. did remind Carolyn of the importance of not creating the negative association and generally stressing Max out. "But he'll never make it through Chicago with an attitude like that!", Carolyn did not say.

Overall, Dr. R. told Carolyn that Max is tolerating his 90 minute feeds well, and that the NICU team will compress them again tomorrow. More broadly, Dr. R. confirmed our view that Max's days of trying to handle his own reflux are coming to an end. He has a week or so to prove himself. If he doesn't show marked signs of improvement, the NICU team will encourage us to consider other options: either turf him to a nursing home for children where he can be tube-fed on a more permanent basis, or the Nissen surgery.

Finally, the pediatric GI, Dr. P., dropped by to see how Max was doing on his new medical regimen. Dr. P. was the one who told me that dairy products were the only potential culprit in Carolyn's diet for Max's reflux. This was the statement that led Cj to completely cut any remaining milk-based products from her diet. Today, Dr. P. asked Carolyn if she was getting enough calcium. Dr. P. recommended a couple of Tums per day. She also told Carolyn "Max will be fine; you need to take care of yourself."