Thursday, February 12, 2009

Evening Update (Thursday 2/12)

Max had a pretty good today. His parents, on the other hand, had one of those days in the NICU that involve a lot of sudden crying fits.

The NICU team ordered a head ultrasound as part of their standard discharge procedure with the idea that Max would be leaving Georgetown for HSC. The initial report was that it showed that Max's hydrocephalus was stable. The first indication otherwise was when the phrenology resident came down to order a CT scan, unaware that no-one had told Carolyn that the radiology attending had found evidence of continued ventricular swelling. One of those dire hospital scrambles then ensued; I'll skip the details. In the end, it appears that Max's left ventricle is swelling as it replaces brain tissue that is shrinking around it. This is probably still fallout from the head bleeds Max suffered around birth. It's not great news, but it doesn't at the moment look like Max is on the path to a shunt again, although the NICU team have increased their surveillance of Max's head circumference, fontanel and overall clinical picture.

The pediatric GI specialist, Dr. P., tweaked Max's medical regimen slightly. She has a much more upbeat assessment of Max's reflux than the NICU team. She is pleased that Max is tolerating feeds over 75 minutes, and she's not particularly worried by his fairly regular vomiting. Today (so far) Max only vomiting at the 9:00 AM feed--the dreaded vitamin feeding. He was uncomfortable at the noon and 3:00 PM feeds but then settled down.

Dr. P. is also encouraging us to try feeding Max an elemental diet. It turns out this means "elemental" in the sense of "simple", and not in the sense of, say, "kryptonite" or any of the other fun elements. This diet is the ultimate in hypoallergenic food. An allergy to, for example, breast milk could be causing all of Max's problems (although this seems like a slim possibility). On the one hand, breast milk is (usually) best. On the other hand, Carolyn will be able to binge on cheese and milk for a week.

Max has thrush, a kind of opportunistic fungal infection. He's being treated with a drug called fluconazole at Dr. P.'s recommendation. It turns out that fluconazole has a side benefit of being prokinetic: it moves gastric contents along faster.

And indeed, the fluconazole may be helping: Max has had a great afternoon and evening. He took some Maalox by mouth this evening, although he spit some of it back up. He handled his 6:00 PM and 9:00 PM feeds quite well. The sainted nurse B. reports that Max was not fussy or spitty this evening, indeed, he's been very happy; he spent two hours in his chair observing his NICU world. She has just given Max a bath and reports that he is now "zonked out". However, she expects him to wake up at midnight ready to play, as is his usual habit.

Carolyn signed the papers requesting a transfer to HSC. However, there is a two to three week wait for a bed. How exactly this will play out is unclear, but for now, Max is in the company of the NICU team that have come to know him well.