Ups and Downs

This is Raeanne posting again. Anytime Dave posts, we'll make sure to say it's him, but otherwise you can pretty much assume it's me.

Becky's our nurse again today. They did another chest x-ray this morning. I think pretty soon Faith's going to glow in the dark from all these x-rays... Anyway, when I got up this morning, she was pretty upset, and Becky was trying to calm her down. I was able to get her calmed pretty well, but then her IV wasn't working anymore, so she wasn't getting her meds like she's supposed to, and that was making her more mad. Becky told me her gases were still borderline, and her x-ray looked worse again this morning, her lungs were a little more wet again.

They're giving her Albumin to try and help her excess fluid get into her veins so she can pee it out. Her face is pretty swollen again, and she's still just got a lot of excess fluid sitting there, especially in her chest and lungs. They've been measuring all of her diapers, and they want her to pee out more than she's getting in, so they know she's getting the excess out too... if the Albumin doesn't help, they'll give her another dose of Lasix this afternoon.

She got weaned down on her Fentanyl again in the night, she was at 4 after surgery, then they took her to 3 yesterday, and now she's at 2.5. They didn't make any changes to her vent though because of her gases, and probably won't again for a little while still. I think the whole vent thing frustrates me more than anything else, because before they put it in, she could breathe just fine, and now they can't take the dumb thing out because she's not breathing as well. I know it's because of the excess fluid in her lungs, which is because of the surgery, but it's still hard because getting that out is such a big step in the right direction.

I did suggest raising the head of her bed to get some of that fluid moving out of her lungs, so we're trying that. I know when Noah was littler and still in a crib, and he would get congested in his chest, I would stick pillows and stuff under the head of his mattress to raise it up and get some of it cleared out, so hopefully it will help her, too. It's got to be better than having her flat on her back...

She had a little Atavan again this morning because she was so upset and not really calming; she's been better since she had that, she didn't even really get upset when they had to do an arterial stick to check her gases. (They usually poke her heel to check her gases, but Dr. Potter wanted to make sure the heel pokes were consistent with her arterial gases.) I found out the other day that the drug they used to paralyze her was actually something different, the Atavan is just to help her stay calm (which makes sense, since it's an anti-anxiety med for adults). So in the previous posts where I talk about them cutting back on the Atavan to let her wake up and move, I really mean the other drug, which I didn't really catch the name of, I just know it was something that sounded like "pink"-something. Some of the nurses are much better at keeping me informed of what she's on than others...

They aren't going to start another IV right away, they're going to just do everything through her Broviac for now (her central line, where she gets her nutrition, it's actually sutured in and is much more permanent and lasting than an IV). They just don't think it's worth it to upset her again, when they can do it that way and avoid more pokes. I know with as much as I hate having an IV put in, she probably doesn't like it much either. And they're running out of places to poke her... I think she's pretty much had IV's everywhere but her head (and I hope that they'll never have to put one in her head, I think that's the worst!).

The other thing that's so frustrating for me, is that it seems like she'll have a REALLY good day, like yesterday, where nothing seems to bother her, and even when she gets upset, her stats stay ok and she calms back down right away, and then the next day is way worse again. I'm hoping since it's still early, things will just get better today and the rest of the day can be better.

After the way the morning started though, I really didn't feel like we should leave her alone, so we're going to watch church on the computer today instead of actually going. It's kind of cool, the church we're going to down here (Calvary Chapel) actually does a live webcast of the entire service, including the music. As much as I am enjoying the church down here though, I am really looking forward to getting home and going to our home church again. This church does feel like a good fit for us, and has been a wonderful blessing to us in the time we've been down here, and even though it's been a good "home away from home", it still isn't home.

On a brighter note, I got to hold Faith for awhile again last night. I can't wait until she has less tubes and wires and it's easier to hold her more often. I think she is going to be a very spoiled baby in that way... I'm pretty sure she'll be held an awful lot after all of this, I know I will be wearing her in one carrier or another as much as I possibly can once we're home; the swing probably won't get much use.

After I held her it was time for cares, and she woke up, so we actually got a couple of pictures with her eyes open! Dave and I can now do almost everything involved with her cares, which is nice because it makes us feel less like "bystanders" and more like parents.

The surgeons just came by on rounds, none of them were anyone I recognized, and it was just pretty much more of the same in terms of what they said. They said her belly button looks great, and it's just a matter of time, getting her off the vent, and getting her bowels working so they can get her off the TPN and start feeding her. Becky did say Faith had a little smear of poop last night, after they gave her a glycerin suppository, so once again, that is a good sign.

Dave just asked Becky for more details about the suppositories; she told him Faith has one once every 24 hours, and the 24 hours re-starts at the time that she has any progress with pooping, so whatever time she had the smear last night is what time the 24 hours re-starts, and if she were to poop at like 3:00 today, the 24 hours would re-start then.

So, pray for poop! Also, the tube suctioning her stomach was better explained to me the other day, and the way it works is that as things start moving through her bowels, there's nothing left to come up the tube but spit that she swallows. So the more poop, the better! Becky did say she's got more bowel sounds going on, so that's good progress.

When we got back to the room from eating lunch, Becky was just finishing Faith's cares, and Faith was a little upset, so Dave gave her his finger... and she wouldn't let it go! So I got a couple of cute pictures of that :)

I will keep updating through the day as we find out more. I don't think she will be extubated today though :(