Saturday, August 22, 2009

Watch & Wait

We're still in the holding pattern that I call "cruise control". Grace is just chillin', waiting for the next thing to happen.

The lung test results came back- absolutely nothing wrong with her lungs. This is good news- this means no aspiration, no infection, no TB... but this means it is cardiac related. Isn't everything? The plan is to do the cardiac cath on Wednesday morning with Luke Lamers. I LOVE Dr. Lamers- great guy! And he's from Wisconsin, so of course he gets extra special honors. :) I call him "Cardiac Man"- it's his super hero name. His name is so Lex Luther-ish, don't you think? And he's VERY tall and thin, and very funny. I guess I have a mini heart-mom crush on him, since he really rescued us our past stay here. I think he would laugh at me if he knew that.

Dr. Lindblade came in today to explain where we're at. Apparently, the pressures in her right ventricle are higher, but no higher than her left ventricle. The reason they're high is the Pulmonary Arteries that branch off the heart are super tiny. Every heart surgery Grace has had, they've patched these arteries trying to make the thicker and wider, but they still remain pretty tiny. Ballooning could be an option, but the problem w/ ballooning is, they'll only balloon a tiny portion, and then it goes back to being skinny. Apparently 3 months post cardiac surgery is when optimal growth occurs- we're only 3 weeks, so they don't expect to see much. They are going to try to clamp the collateral arteries, if they're present. Here's my analogy for that: Imagine a main freeway, with a lot of little side roads and routes surrounding it. To avoid traffic, people might take those side routes, keeping the main freeway somewhat less congested. In order for the city to warrant widening the freeway, they would need to see more traffic, so they have to shut down the side roads to encourage growth. Make sense?

Grace is back to herself again- we've been enjoying holding her and tickling her. She's gotten cuddled by Oma, Mama and Daddy.

The Ronald McDonald House gave us tickets to the Cardinal's game tonight. Felix and I are going to try to sneak away for a bit and enjoy ourselves- I think it's important to recharge ourselves and try to have some normalcy, despite the situation.

So, back to the heart of the matter- HA! Get it? The "heart" of the matter? I crack myself up sometimes.... The cardiac team will meet on Monday during conference to decide if we'll cath this week, or 3 weeks from now (the thought is that if they decide to balloon, they have to wait until 6 wks. post surgery...), but most everyone thinks the cath is neccesary to coil off those "side routes". So- we're here until Tuesday, at least. They're trying to wean Grace off of the oxygen, but she's not having it. She's still on a low flow machine (Poor Man's CPAP), and at 5 liters @ 50%. They tried to go down, but she lost her oxygenation and was working pretty hard, so the team bumped her back up. The problem- we can't go home until we get back to the wall.. which is quite a weaning way away.

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  1. It sounds like you'll still be there on Monday if you want me to drop in, I'd love to say HI! Owen wouldn't mind seeing his nurses I'm sure. Let me know if it's okay. We have a GI appointment at 1:30, so we could drop in right after. I know how it is and somedays you just don't want visitors, I'd completely understand.

    I Adore Dr Lamers as well. He's nerdy, sweet, funny.. HA. We get a kick out of him. Hopefully the cath will do Grace good!!!

    I always hate "waiting" for the conferences, and waiting to know what's happening next. It's our life.. oh and we love our heart kiddos. :)


  2. I love how you explain things in stupid terms for me. :) Oh, wait, it's for everyone else too? All right, I am cool with that. Ha ha, glad to hear Grace is back to her normal self, but a bummer that you aren't able to go home yet due to the "poor man's Cpap". Bree was on that in the NICU when she wouldn't tolerate the Cpap at all...((HUGS)) my friends!

  3. Hi,

    Your little girl sure is a cutie:) I know you are probably well aware of Dr. Frank Hanley at Lucile Packard in Palo Alto, CA. But, have you ever lot of getting an opinion from him? Or maybe you have? My daughter has Pulmonary atresia(she is missing both pulmonary artery and valve)MAPCAS, Hypoplastic right heart with an intact ventricular septum. She has had 4 surgeries by Dr. Hanley and is almost 2 years old. We have been flying to California every 3-6mths. ever since she was 3mths old. Just wanted to lend some information and let you know your little girl will be in my thoughts and prayers. If interested you can go to CP Name: Callie07