Wednesday, March 24, 2010
Stumping them all
Bodie's favorite roomie, Isaac, got Bodie this bib. It could not have more perfectly described our Bodie. :) He is giving everyone a run for their money around here!
In my last post, I said they had cancelled Bodie's g-tube because he was taking full nectar feeds orally. Then, on Monday, they decided no, the surgeon wasn't comfortable with that since hypoplasts are just so fragile. (If Bodie misses 2 feedings, he'll be back in the hospital, so not having another way to get food and meds in him is problematic - all it would take is a cold or fussiness (nectar feeds take a lot more work to get down, so it wouldn't take much for him to not want to have to work and take the bottle).) So they were putting him back on the schedule for the g-tube and we were totally fine with it as a prophylactic measure.
Then, the cardiac team and nurse practitioner happened to be here when Bodie was feeding (the OT was here at the time as well) and everyone was completely amazed at how well he did (he finishes his bottles typically in about 10 minutes, well within the 20 minutes he's allowed, and he appears to be in NO distress - in fact, he seems happiest when eating!). So then they were stumped, trying to figure out, if they do put the g-tube in, how do they decide how much we are allowed to give him orally? They can't put him on a time limit like they would normally do, since this kid pounds it back so darn quickly - which means we'd be pulling him off the bottle well before he was ready, which would just piss him off. So at that point, the g-tube would just be a prophylactic measure - and they just don't know if they're comfortable putting a fragile kid through a surgery like this as a precautionary measure only (as one of the cardiologists said, "this is major surgery - it's not like getting your ears pierced.")
So, now almost everyone is in agreement that he should go home on oral nectar feeds on kind of a test basis for a couple of weeks - if he can't gain weight or keep up with his feedings, then they'll put him on the schedule for the g-tube (or put him on the schedule later on if he just can't keep up with his feeds as they increase). But the surgeon still hasn't said that's ok - and since he runs this program and knows this condition better than anyone here, his opinion is obviously the most important one (even if given the option, we wouldn't be remotely comfortable bringing him home on oral feedings alone if the surgeon wasn't on board with it). The surgeon is at the hospital tomorrow, so I think they're going to try and get him up to look at Bodie and watch him eat to get his opinion.
For the time being, we are in a holding pattern - Bodie is still getting full feeds and they're moved him to an "ad lib" feeding schedule, meaning he eats when he's hungry - usually 2 hours or so between feedings during the day and we can let him go up to 4 hours between feedings at night!
As for his sat issues, they still can't figure it out - at this point, they're chalking it up to pulmonary hypertension and planning on sending us home on oxygen, with the hope that we can wean him off of it as his lungs get stronger and he gets bigger (not ideal, but hey, at least it will get us home!). Speaking of home, we still don't know when that will be yet. If he does get the g-tube, that will be scheduled for early next week, and then we can expect to be here maybe another week or so getting feeding issues settled. If he doesn't get the g-tube, we should, God willing, be home sooner than that!
Prayer requests for today:
1. Pray that Bodie starts gaining more weight from his oral feeds - I think we'll all feel a lot more comfortable when that happens!
2. Pray for wisdom for his doctors in determining whether or not he will need a g-tube. We want what's best for Bodie, so we'll rely on what the doctors have to say - pray that God would guide them.
3. Pray for continued improvement in his oxygen saturation levels - taking home a kid whose sats are all over the place is a really scary thought for Dusk and I!
And, of course, it wouldn't be a Bodie update without new pics (especially funny sleeping pics!):