9/26 Update On Stacey: I Think We're In For The Long Haul.

OPERATIONMINDCRIME

(1000+ posts) Send PM | Profile | Ignore

Wed Sep-26-07 05:00 PM
Original message

9/26 Update On Stacey: I Think We're In For The Long Haul.

Edited on Wed Sep-26-07 05:16 PM by OPERATIONMINDCRIME

Hello again all. It's been really emotional since yesterday afternoon and today, and I think it's started to hit me that this is going to take a while.

Yesterday wasn't the best day, but it wasn't the worst either. I just really had been hoping she would start showing recovery by now, but it just ain't gonna work that way.

So as of now, here's where we're at:

Her counts, though lower yesterday, came back up a bit again to 1.7. She still has acute kidney failure and her creatinine is now at 2.3. I had a long talk with all the doctors today, and was told that when her blood pressure plummeted on saturday it probably damaged her kidneys a bit. Nothing overly harsh though, since she's young. The damage may reverse itself and if not, they said if she lost like 20% kidney function it really ain't the end of the world anyway.

Her chest xrays worsened a bit this morning, and they think it might be more fluid as well. They said she's in acute respiratory distress or whatever. That's why since yesterday, they had to raise the oxygen levels on her ventilator. They are now at 75% with a PEEP (positive pressure, not sure what the number means too much) is at 12. That was hard to hear, cause just yesterday morning they were telling me not to be discouraged, because her vent settings were so good and some have to have them such higher. Then, by that afternoon, all of a sudden they had to be higher. They had been at 40% previously.

After not having had a fever for over 2 days, she spiked a fever again early yesterday morning and has spiked fevers again ever since. They aren't quite sure why.

On an amazingly positive note though, yesterday afternoon she was able to be taken off the blood pressure medication completely, and is now holding her own quite well with that. That's a huge sign.

But her immune system is still basically non existent and there is no indication at this time that she is starting to fight this off.

Having that said, I will summarize the following:

I had a huge talk with her team of doctors. After talking with them, I now realize this isn't day to day anymore. We're in this for the long haul. They think if she's to turn the corner, that won't happen for at least a week and more likely not until 2 weeks from now. They are expecting her to be there a month. They told me not to think in terms of days, but in terms of weeks and literally probably a month.

They say she has youth on her side, and are hopeful she can hang in there. She just needs time to let this virus run its course and for her immune system to mount an attack against it.

They said she's a tough case, and that it isn't acting like they'd expect. They confirmed the adenovirus pneumonia but said her chest xray patterns etc are NOT consistent with what they'd expect from that alone. They still think she may have something bacterial on top of it, but as of yet no bacteria has grown in any culture. As of yet, there has never been any evidence of a bacterial infection.

So they said they're not really sure what's going on, and that certain things are throwing them for a loop. I wanted them to put her on an anti-viral called ribavirin, but she can't get it cause it hits the kidneys hard. So they said they are searching for any anti-viral type medication that might even possibly have a chance of attacking the adenovirus, but without being so toxic. It's really kinda turned into an episode of House. They don't know exactly why things are going the way they are, and don't quite know right now how to stop it other than just buying her time. I got the impression that this is no typical case they're dealing with here. Friggin figures right?

So that's where we're at. We're looking at weeks, I'm afraid. The worst part is that my 4 year old is really at his breaking point with all this as it relates to her not being around. I don't know how I'm going to keep holding him off telling him momma's still sick, and that he can't hug her yet.

So I'm basically also going to try resetting my brain a little. I have to get out of this minute by minute hour by hour mode. I have to get it back to some sort of normalcy in order to get through these next few weeks of waiting, where the minutes pass like hours.

So I'm not going to be going there every single day any more. They basically told me not to, and that they are there to take care of her but that I need to be here to take care of myself, my kids and the house. So I think I'm going to cut back to like an every other day thing.

I also think I'm going to look for those websites where you can post updates and stuff, and then I could link it here. I'm not sure I'm going to keep posting updates here every day, since right now it looks like it's gonna take a while for any real progress. I promise to post, however, if anything significant either way happens. But for now if I fixate on every single blood count, every number, after every test result phone call, I'll never get through this. I need to just distract myself and let the days pass while hoping nothing goes too wrong, and that after some time goes by things start to improve.

Oh, and did I tell you guys that our 5 year wedding anniversary is Saturday? I was hoping so badly originally that she'd be off the thing by then, but it just ain't gonna happen. But I'll celebrate with her anyway, even if she's unconscious, and I'm still gonna put the wedding video in the dvd player in her room and watch it with her, even if she can't. Do what ya gotta do, right?

So thank you for all the prayers. I'm also going to be posting a different picture for those who want to visualize her healing. It occurred to me that posting the picture of her prior to getting sick might not be as effective as posting a real picture as she looks RIGHT NOW, and in the condition she's in right now, as I think that would be more representative of how to send the positive vibes. I know I'm going to be staring at this one now, visualizing her healing.

Thanks again for being here, and for putting up with these long posts that probably could've been trimmed to two paragraphs.

Hangin in there,

OMC