Long, boring stay is right! Three more weeks to go.

My biggest frustration with this whole hospital blogging thing is that half the time I post something, I'm quickly given information that contradicts everything I've just told you! The upside is that everyone (including me) has the wrong information all at once. But, 'tis the nature of the beast. It doesn't happen because people neglect to tell me things; in fact, I pester them with questions so often that I generally get more out of them than they figured I would care to know. Things just change so quickly as he reacts (or doesn't) to meds or test results come back...or both.

So yesterday when I left off, we were treating Brandt for withdrawal. After watching him for a while, and then receiving the echo results, they gave us a new consensus. While part of his symptoms were from withdrawal, his heart function is still not good, so now we're looking into heart failure.

I know that sounds terrifying, so bear with me.

It definitely isn't good news, but it doesn't mean that tomorrow he's getting put on the transplant list. In fact, that still may not happen for years, depending on what happens in the next few weeks. I told you yesterday that milrinone (I finally looked at the tag on his IV drip, so that's the real name this time) was another drug we're having problems with. I was thinking that it just did what the NO did, and while that's part of it, its more common purpose is just heart support. He's not doing well without it, but since he kicked off his old IV, today they took him into the lab and placed a PICC line. Remember that from last time? It's an acronym for Peripherally Inserted Central Catheter. In other words, a small tube that runs from an entry point in his groin and ends close to his heart. It's an IV that can't be knocked out by flailing baby legs, and they can also get blood draws from it, so they can stop poking his heels for labs.

As soon as they got that placed, they started him back on the milrinone. It takes a few hours to get working, but as soon as he woke up, he demanded a bottle, chugged six ounces, and fell back into his drug induced stupor. (It takes a while for the anesthesia to wear off.) He's already a happier kid, so we know we're going the right route.

Heading in this direction, we're mostly on a drug based path. Our goal is to wean him off of milrinone, but to do that, we have to figure out a drug cocktail that he can take orally that will accomplish the same things. We're working with the heart failure team to get that going. As we put him on those meds, we'll very slowly wean him from the IV, and by slowly, I mean .1 mL every two days. He's at .5 right now, so we're looking at ten days there, then another week to make sure that he's not going to go back downhill; it can take a while for milrinone to clear from the system, so symptoms can present themselves quite a while after it's been turned off.

In the meantime, he also has to get shots twice daily of an anticoagulant to make sure that he doesn't develop clots around the PICC. It wasn't as big of a deal last time around, but now that his heart is pumping less effectively, it's a very real possibility. Thankfully, the shots aren't anywhere near as painful as vaccine shots would be. The needle is tiny, thin as a hair, and is injected into the fat layer (of which he has plenty) instead of the muscle. Not much fun, but not traumatic either.

So there are a few possible end results here. It could be that his body doesn't do well with having the milrinone taken away, and his heart gets worse. Possible, but not super likely. His heart function could balance out and maintain its current status, and we'll get sent home with meds to continue until his next surgery or until he no longer needs them for whatever reason. Finally, there's a small chance that his heart just took a hit from his cold, and then the surgery, and just needs time to recover. He may perk back up and come home with no meds at all...but that's not super likely either.

There has been one major ray of sunshine today! As I was talking to the heart failure specialist, I got a call from the Ronald McDonald house. Apparently, after I chatted with the cardiac social worker today, she gave them a call explaining our situation, and they bumped me to the top of the list! I HAVE A ROOM!! The timing of this is just impeccable. Sleeping on a hospital room couch for three more weeks does not a happy person make, especially considering we have to move rooms for one reason or another practically every other day. Being able to unpack and sleep on a legitimate bed every night is quite literally a God-send. I've been begging for strength to deal with all of this, lately, and I think this might have been exactly what I needed. One more night in the hospital, and then I get some real sleep!

Oh, and if all goes according to plan, one week from now, I'll get to see both Tanner AND Wade!