Tuesday, March 31, 2009

Why don't we like orphanages

Carolyn and I had a family meeting with the HSC team to discuss their plan for Max. They told us that, on this coming Monday, they plan to pull Max's NJ tube back out of his jujenum and into his stomach, converting it into a more standard NG tube. They will wait a couple of days to see if his reflux has subsided enough for him tolerate large quantities of food hitting his stomach (under the current arrangement the food bypasses his stomach and trickles directly into his intestines). At first, Max will be on continuous night-time feeds (as he is now). After a few days, the HSC team will start compressing his feeds. This brought back memories of the trials Max faced at Georgetown trying to get his feeds down to less than 90 minutes. If Max doesn't tolerate an NG tube the HSC team said "we'll consult with a GI specialist and decide what to do next." We know, however, that none of those choices are good.

As we talked about the family meeting afterwards, Carolyn and I realized that we had just signed up for at least another month at HSC, and that if Max failed to tolerate NG feedings, an unknown further stay while his other options played out. In the back of our minds were the two-year old children we see at HSC, who have the diagnosis of "complications related to cerberal palsy"--a diagnosis that wouldn't be wrong for Max. We started adding up the pieces: somewhat aimless treatment regimen plus the presence of older children equals the possibility that Max could be at HSC for months and years to come. We simply can't keep up the same heavy schedule of visits that we have been for such an extended period. Of course, most families can't either. The HSC, in effect, is an orphanage.

This prospect has galvanized Carolyn and me. No matter what happens with Max's feeding trial over the next few weeks, we are going to bend our efforts towards getting him out, and out soon. I also plan a private conversation with the HSC attending to find out under what minimum conditions they're willing to discharge Max and, incidentally, what all those older babies are doing there.

One way or another, potentially after one or more surgeries and with all sorts of feeding equipment and medical support Max will be coming home. Because Carolyn and I don't like orphanages. And we had several reminders today of exactly why it's hard to have strangers raise your baby. Exhibit A: Max's nurse who laughingly said that Max is a well-known manipulator of grownups and that we were going to have to let him cry rather than spoil him by picking him up to soothe him. This was said lightly, and in passing. Of course the HSC nurses don't let babies cry for extended periods (I've watched them about their business at odd hours and they never let a baby cry more than a few minutes). But this was a grating reminder that Max is being cared for by people who don't necessarily share our parenting philosophy. (Summary: Max has had a hard time of it and deserves high doses of cuddling on demand.)

Perhaps the only member of the family who isn't convinced of the need to get Max home is Max himself. He appears to hugely enjoy his life at the HSC. From what we can tell, he spends most of his time smiling and playing. Carolyn captured some video of him laughing happily.