Thursday, February 12, 2009

Team Meeting Part II: Son of Team Meeting

Yesterday Erin & I had another "team meeting" to discuss Blaise's progress with her various care-takers. This one left us feeling distinctly better than the first meeting we had; Blaise's outlook is still uncertain (and complex) but I think we both were left feeling like her team has the situation pretty well in hand.

The plan is this: Assuming Blaise's bilirubin levels go down to normal now that she's on Omegaven (which they should) her surgery in April will attempt to reconnect her small bowel with her large bowel, taking the ostomy away and leaving her with a continuous GI tract. The word "attempt" is in there for a few reasons: Before they do any of this, they'll do a contrast study in mid-March to see how much large bowel is there, and whether or not it has any strictures or blockages. It might not be complete and it might also be compromised in the same way her small bowel was. The other part of this is that having a continuous GI tract comes with its own worries. The large bowel can help absorb water and electrolytes, which is why her surgeon would try to connect even a small portion of large bowel to what's left of her small intestine. Thing is, the nature of enteral feeding (tiny amounts at a time) can make it difficult for the large intestine to work properly. This can lead to blockages in the colon, resulting in further damage to the large AND small bowel if you're not careful. If they do decide to reconnect her, we're going to have to be very careful to make sure this isn't happening. If it does happen, we're right back where we started (or actually, a bit worse).

Lots of stuff to think about and try to prepare for, but the good thing about all of this is that there's a plan. The first time her surgeon operated, no one had any clue what was going on in her abdomen. The next time, we're going to find out everything we can beforehand. There's still particular, if her bili levels don't drop as soon as we'd like, her surgery may be delayed by 4-6 weeks. That's all in the service of making sure she's as strong as she can be, though, which sounds to us like a great reason to wait.

Besides surgical details, her dietitician seems happy with her growth. Her weight (now 2.23kg, or ~4lbs, 14oz) has fluctuated a bit since she's moved to the floor, but her length and head circumference are pretty much on track. It turns out that these are more stable measures of growth, since weight can depend a lot on hydration and calorie burn during the day (due to "appropriate crying," for example).

After the meeting yesterday, we also had a very nice surprise waiting in Blaise's room. It was a Valentine's Day present from one of her old roommates in the NICU. His name is Malachi, and he and Blaise were actually due on about the same day (2/20/09 for Blaise, 2/24/09 for Malachi). While Blaise was just about 7 weeks early, Malachi was almost 14 weeks premature. The NICU isn't the easiest place to strike up a conversation, but you can't help but get to know your neighbors. Malachi's grandmother was in pretty much every day to see him, even though she lives in Springfield (over an hour away from Boston), and while we never wanted to pry into Malachi's situation too much, we were always pulling for him whenever he was having another procedure.

Malachi was scheduled to leave the NICU right around the time Blaise was transferred to the floor, and his family was understandably nervous about it. In their case, transfer meant heading for a hospital out in Western Mass. which can't help but feel like a downgrade in care given how great everyone is at Children's. We wanted to do something to say goodbye and good luck, so after Blaise was transferred we gave them a onesie from my lab and a gift card from Borders, since we noticed that they were all serious readers. Anyway, yesterday afternoon we returned to Blaise's room to find a set of beautiful outfits for our baby, in preemie sizes that should actually fit! She's also got a great Valentine's Day bib to wear and a nice note from her friend Malachi. We both really hope he's doing well (either at Children's, the hospital in Springfield, or maybe even at home) and it was great to know they're thinking of us, too. I have to say, if we could have avoided being part of this club, we would that we're in it though, it is true that the membership's great.

1 comment:

Ruth Rosenholtz said...

Thanks for the update. Sounds like things are going pretty well. We be thinking of you all, as usual. I have to say, though, miracle substance though it may be, who named "omegaven"? Sounds like something you'd say if you stepped in something gross.