Today’s Update

Looks like we get to go home tomorrow (though it’s still being phrased as “probably”) on home IV therapy. Evidently, they do not typically do this with babies. (um, evidently, they also never send babies home with a Broviac, which I didn’t realize.) (Evidently, nephrology sets their own rules.) (Evidently, I like the word “evidently.”)

Dr. Brophy wants to get us home, and I want to get us home. So… hopefully, we get home.

He needs 14 days total of IV antibiotics from the first negative culture, which still sits at 7/13, though that culture has until Wednesday to start growing something.

We’ve also lost all of the ground we made in his hemoglobin, with the frequent blood draws. He was up to 10.5 or so, and now he’s back down this morning to 8ish. It could be (and has been) worse, but that’s mighty discouraging.

We had to cancel his 6 month checkup, and I’m unwilling to take him in to the peds office with his port accessed, so that’s going to have to be pushed back until that last week in July, when he’ll be 8 months. Well, whatever.

He is back to eating orally, did I mention that? About 25% of his total daily intake. (50% of his intake is overnight with the pump.) I know a lot of people who discontinued their overnight pump feeds and feed their babies completely during the day. I honestly don’t see that as achievable for Teddy. I feel like all I do all day is try to feed him and give him boluses (SMALL boluses – he throws up anything over 15cc at a time), I can’t imagine doubling what I try to feed him during the day.

Oh, and I submitted an application to Icing Smiles for his first birthday cake. 🙂 Wasn’t going to, but the more I think about it, the more I decide that his first birthday should be something special.



One thought on “Today’s Update

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s