Wednesday, August 30, 2006

Impatience versus fear

Woody's been doing so well now for the last few weeks, the idea of actually bringing him home has been more and more at the forefront of our minds. This leads to a particularly strong feeling of mixed emotions. On the one hand, Maggie and I are very much impatient to get the kid home and actually do parent related stuff. On the other hand, we are scared of this, both because we don't have much parent-type equipment, and also because we aren't sure what we're going to do when we have to take care of him when he's not attached to all the monitoring equipment. I can just imagine all kinds of scenarios where Maggie is asking me what his sats are and I'm looking in vain for a monitor and saying "I don't know! Is he breathing?" and Maggie answers "there's no BPM line!" and then we have to do things like, you know, actually look and see if he's breathing using our eyes and ears and stuff.

It sounds pretty comical, and it will be, I'm sure, but he still does occasionally have these little apnea/bradycardia spells associated with his feedings, and it can be terrifying to watch your kid forget to breathe, or to beat his heart, because he has some reflux hitting his vagal nerve, so it's not completely out of the realm of reality. On the other hand, I understand that the reflux issue is compounded greatly by having to do gavage feedings (that is, with the stomach tube), so if we can get him bottle/breast feedings for most of or all of his feedings, we can help that issue out greatly. Many of the kids that have this problem need a thickening agent added to their milk, too, which can aid the reflux. So even though it's a problem now it may not be one when he comes home.

We still don't have much of a good idea when that will be. When we had the big intervention at the first of August they said it wouldn't be until November or so, but that was assuming that he'd be trached, and it sure doesn't look like that's happening now. So near as I can figure, if all goes well he needs about another month to figure out the breathing, then another few weeks to figure out the eating, so the earliest he's coming home is mid-October. We sure want it to be not much later than that, because it's hard as hell to leave him every night in the hospital, when we want him here with us. Although it will scare us to have him here too. I mean, what if we break him?


At 4:27 PM, Anonymous Grammie said...

You've got it all wrong. Nights without sleep and all the attendant worries of having a new baby at home may BREAK YOU! Woody has already proven that he's more resiliant than one would suppose. He'll be fine.

At 8:32 PM, Anonymous Auntie Val said...

Besides, you didn't break me . . . and god knows you tried. ;)

At 3:34 PM, Blogger Bill Hooker said...

How's progress on that burrito? (I assume the kid's fine.)



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