Saturday, February 25, 2006


So I've typed up this update twice, three times FIVE times. Blogger ate it, again and again. Then, blogger wouldn't let me sign on at all. Asshole Blogger. I started this post the first time at 4pm, it is now 9:42!

So here's how today went:

We were supposed to be there at 8 to talk to the doctors, fully expecting (dreading) him to be on dialysis and trying to prepare for whatever that looked like and whatever complications may arise from it - which is why we wanted to talk to the doctors. You know, questions questions and more questions. They come around early, but we couldn't go up when we first got there, so we went to the cafeteria.

While we were down there, who do we see, but Nova's nurse Sharon (she's an absolute DOLL!) so she stops to talk to us and guess what?! He's peeing on is own (with some medicinal help) and hasn't had to go on dialysis after all. She was as convinced as we were that he would, so we were all really surprised. Apparently they started him on diuril in addition to the lasix, and they kicked things into gear. YAY! PEE! Yes, only a parent understands being happy about pee.

(See Doug, I TOLD you that diaper contents are wonderful diagnostic tools!)

OK, so it wsn't exactly diaper contents, since he's catheterized, but anyway. And we have a theory about that too, see, Nova has always been one of those kids that peed on you EVERY TIME you opened or removed a diaper. He has taught us to change a diaper at speeds heretofore unheard of, lest we get (golden) showered. It's become a running joke around here actually. Anyway, up until the middle of the night last night, he was in a diaper, but his swelling caused it to get too tight and leave marks on his legs - so they removed the diaper... Viola! He started peeing. Too bad we didn't take it off earlier eh? ;)

Anyway, no dialysis, more diuretic meds, but that's ok, because we know his kidneys haven't failed. He 's still on Dopamine, Viagra and Milrinone. They took him off of the amioderone, but had to go back up on his epinephrine. His rates and pressures were looking ok after they upped the epinephrine, but he was still very swollen, and though they'd reduced his fentanyl, he still hadn't been waking up any or moving at all.

So we went up a bit later and yes, he was still horribly swollen, maybe even worse, his IV has begun to leak into his arm and make it swell even more, so that looked even MORE swollen so they moved the IV to his foot and elevated his pudgy puffy little hand. But overall, he was OK, and peeing. Seriously, peeing was such good news that we were ok with there being no forward movement with anything else.

We went up the next few visits, and we left after the 2 o'clock visit because poor Ma had the rest of the animals, and we figure she needs a break. We got home about 3:30 and told everyone how he was doing, tried to update my blog, several times - it's now eaten this post THREE times, and then locked me out completely. At about 5, Kory is on the phone with a friend and he comes running through the house, yelling, "Mom Mom the hospital is on the other line and I don't know how to click over!"

So my heart drops because the hospital only calls with bad news, and things can go from great to shit in about 30 seconds with a baby. They hung up before I could get to the phone, and I'm so freaked out that I can't find the hospital number. I'm hunting all over the place in a total panic and after about 2 minutes of that, I realize, that, Um DUH, the number is ON THE CALLER ID! and call her back, completely terrified of what they're going to say.

Nova's nurse answered the phone and I get it out who I am, and she says, "Oh Ms LeClair (haha) I'm sorry to call you, I know it must scare you to get a call from us, but... I'm calling with good news - I just HAD to call you. I breathe for the first time in a good 5 minutes, and sit down for fear of falling over.

In the 3 hours since we'd seen him, he'd peed, A LOT, his swelling was down, his epinephrine was off, his rates and pressures were stable without the epinephrine, and he'd begun to open his eyes!

Now I hate that I wasn't there when he opened his eyes the first time, of course, but chances are I wouldn't have been there even if I'd have been at the hospital because I'm only able to be up there so little (15 minutes out of every 2 hours) and he's still so zooted on fentanyl and Midazolam that he probably has no idea who was or wasn't there, right?

This roller coaster is a bitch, lemme tell ya, but these highs are fucking awesome. I've never been so happy or relieved as I was. She said the doctor was amazed at the sudden major improvement, she was absolutely bubbling over with happiness, and me? Well, I was squealing like a little pig :) It was very nice.

So, yes, we're very very happy right now. We still, somewhere in the back of our minds, are trying to remember that (as illustrated here) things CAN change with mind blowing suddenness, for either good or bad, but right now, we're just soaking up this good news that I was begging for last night.

Pictures in a few minutes, as long as Blogger allows it :)


  1. Jesus Erin! You know how to string us along don't you?! Here I sit, tears freely flowing, so incredibly happy that I could do a dance! GO NOVA!!!

  2. A few thoughts:

    2) We use Lasix and Fentanyl at work. Didn't know they were people drugs. :o)
    3) CTRL & C every so often. I have become a compulsive copier due to Blogger's selfish appetite for posts.

    And again...

  3. Whew! YES!! (While you're becoming a veritable pharmacist.) Am so pulling for you and your little guy.

  4. I'm BEAMING. I'm so very proud of him.