Midday update (Tuesday 12/3)

Summary: Max is looking and acting much better today. However, he has picked up some kind of infection and the docs are starting him on antibiotics and doing a full sepsis workup. As part of the sepsis workup the docs tried an LP and failed to get any CSF for analysis.

First, the bad news. The docs report that they found "something growing" in his most recent blood culture. It's too early to tell what exactly is crawling out of their Petri dish, but this is a conservative group so they're going to hit him with broad spectrum antibiotics until they find out more about the infection and then they're going to target their attack. As part of the standard sepsis workup, they tried doing a tap, with the intent of drawing more CSF than the amount just required for analysis as part of the ongoing effort to manage his hydrocephalus. However, in their early attempts to get CSF they failed. Unclear what this means or why they failed to get CSF. This is happening right now.

Okay, the good news. Carolyn reports that Max is looking and acting much better today than he was yesterday. Nurse Becky (who we are considering adopting when this is over) pointed out that he's still not all the back to his usual self. Only Nurse Becky remembers what Max was like before his most recent GI freakout.

Physical therapist Jessica saw him at 11:30. No formal report, but Carolyn says that he was very active and alert, and went after his pacifier "like Maggie Simpson". (Carolyn thinks Max is really hungry). He was waving his arms and legs around, pushing back against Jessica, etc. Carolyn said that Max was "playing" with Jessica.

Max has had several more dirty diapers since last night's eruptions, although production has been small. His vitals look really good. They've turned down his respiratory support and he's back on room air (i.e. 21 percent O2).

Going forward, they will restart his feeds slowly and without additional fortification (at least at first). And then they won't use the previous fortification formula; instead, they'll use something easier to digest.

Max is still really swollen and oedemous in his lower extremities and groin.

Interestingly, Carolyn learnt that age 5 to 6 weeks is the nadir of babies' red blood cell production, so it's not unusual for them to require a blood transfusion at this age.

Outstanding issues: How the LP went (how much they were able to extract) and what it is that's growing in his blood.