Sunday, August 18, 2013

Ups and Downs

Waverly has been up and down this week, but today had a really rough day with lots of coughing and getting up gobs of junk (technical terminology there). Her o2 sats have been all over the place (as she's moving around mucous and mucous plugs in her lungs, presumably). Her heart rate has been elevated some, and she was working really hard to breathe this evening-her little chest was really pushing and pulling air. Please please pray for our little one, for her comfort, for wisdom for us as her parents.

Monday, August 12, 2013

Back home

We are happy to report that Waverly came back home yesterday afternoon. She's got a new medicine on board-tobramyacin (an inhaled antibiotic) and is on another strong antibiotic. We are trying to see if we can help get her lungs cleared out a bit more. We also got her bipap better situated (we had a bad connector on it that was making it less effective than it should have been), so we will be using that more consistently at night. 

We are glad it was a quick hospital stay, but it was still quite difficult as a lot of difficult things were brought up. Please pray for our hearts as we walk this road. 

Saturday, August 10, 2013

Back in PICU

Waverly is back in the PICU again. She'd had a sort of up and down week, and was coughing up a lot more mucous plugs, but nothing terribly alarming for the most part. On Thursday night her sats were all over the place (again, not that uncommon), but late at night she seemed more "off" than normal, and then she vomited and started running a fever. And although her sats were actually better, her hands and feet were blue. So we decided to go ahead and take her in to the ER, where they admitted her. Her lungs don't look worse than they typically do, but her typical is pretty icky. So we've been doing lots of breathing treatments and deep suctioning on her to try to get the nasty junk out, and she's been on IV antibiotics. We also just started an inhaled antibiotic via the nebulizer to see if that helps clear up her infections and make it easier for her to breathe. We've had her on bipap more here, and have been working on adjusting the settings to make it more beneficial for her and work better at home. 

The sad thing is, we had planned to go away for the weekend for a "family vacation". As you may recall, we had to split up for our vacation this year, and that was hard on my mama's heart. So we had planned to go this weekend to a friend's house about an hour and a half away, and talk all THREE kids. They have a pool (all my kids really care about), so we would go swimming (what you do on vacation, right?), hang out as a family, and visit with some friends in the area. The kids were so excited, and I was excited to have an opportunity for our WHOLE family, all FIVE of us, to do something together where Waverly could be a part and mommy and daddy could be together with all the kids. But because of this we couldn't go (Johnny went just for the day with the big kids because they were so disappointed to have to miss). I really wanted that memory for the older kids, instead of having one more instance where one parent was with them and the other parent was with Waverly because she was too sick to come. But, in all this, I know that God is in control, and that even though I *think* my plans would have been a lot nicer, He KNOWS what is best and He loves us and is GOOD. 

I'm glad Johnny was able to still take the kids for a little day trip. Hopefully they are having a great time, and we can still try for something some other time. Instead, we had a family pizza party in the PICU last night (see the last pic).   :)    It does stink that when I get home I have a lot of unpacking to do from a trip that didn't even happen!
In the ER feeling icky.

Snuggles with a tired mommy (3 hours of sleep).

Family pizza party in the PICU!

Wednesday, August 7, 2013

"Talking" face

The other evening Waverly had a lot to say. Her eyes were very expressive and she seemed to have much to tell me about her day and the trees outside as we looked out the window.