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Just a quick note to let you know that Waverly came home yesterday afternoon. She's done well and so far hasn't needed to be on the bipap, but we're so happy to have it for when she may need it. We're still being very aggressive with breathing treatments, including lots of suctioning, but we are thankful to all be home and together once again.

Back in PICU

Waverly was admitted again in PICU this afternoon after yet another night of high oxygen needs and low sats. She doesn't seem really that sick and her chest X-ray didn't look too bad (just hazy) but they decided to go ahead and put her in and get her started on bipap so she can have that at home. So she's been on it all afternoon and we will get her home one tomorrow and hopefully be out of here soon after that. It shouldn't be a long stay. Pray that she will tolerate the bipap ok and that we can get her set up with all that she needs and get her home quickly. Thanks!

Still here

Waverly continues to be on the brink.  She spiked a fever Thursday night but hasn't had one since. But her need for oxygen has been higher than it ever has, needing as much as 4 and 5 liters at times just to keep her at 90%. She was asleep in bed an hour ago, and is now back downstairs with us as she woke up and was at 85%, and wouldn't come up even at 4 liters of oxygen. So she is now receiving more breathing treatments, suctioning, etc. She's still coughing lots of junk up, although not coughing continually like she was at my last post. She's on antibiotics yet again and steroids to try to help her breathing improve. I really feel like she'd benefit from more pressure support through a cpap or bipap, but we still don't have one yet (grrrrr!!!!), so we just turn up her oxygen, continue constant breathing treatments, and wait and hope to keep her home.

I know that many others would have already had her at the hospital by now, but she truly could be hospitalized way more often than we take her. Although we don't know how short or long her time with us is, we really want her home with us as much as possible, as long as it's best for her. So we work hard to keep her here.

I know so many of you pray for Waverly, and for our family. We are so thankful for those prayers. We need them so much.

Just breathe...

Waverly is sick yet again. She started her day yesterday sounding really junky, and by the afternoon was coughing like crazy and getting lots of junk up. She was up pretty much all night coughing on and off, and even coughed so hard she vomited, which then leads to aspiration. She was in 3.5 liters of oxygen overnight just to stay at 90% saturations. She started her fever this morning but it's been pretty controlled with medication. She got a chest X-ray today and we are waiting on the call from the doctor for those results. Please pray for our girl. Her breathing is looking quite labored. We don't know that she quite needs to be in the hospital just yet but she is close to it.

We also need prayer. I often catch myself almost holding my own breath, as I suddenly don't know what's coming. I try to plan for all the possibilities, if she'll need to go to the hospital, doctor, what to do with the older kids, how to fit in work, etc. It's overwhelming. And then all the work to help her with each breath. Running at the sound of each cough to suction her. And then there's the lack of sleep. Listening to every sound she makes. Running to suction in the middle of the night. Cleaning off her vomit. And the husband that's not feeling well, that's got me worried. And my body is worn. And the trip that's coming this weekend with friends that I was so looking forward to.

And the Enemy starts whispering in my ear that it's impossible, too much, not deserved, never going to happen, and this pain and struggle is never going to end. I hate to see her suffering. I feel so helpless watching her chest work so hard to pull in each breath. It's hard to imagine that any thing or any one can be big enough to handle all this. But then I remember that His grace has carried so many through so much. And He promises that though dark the night and deep the valley, He has not left me or us alone. His grace through the love and support of others helps remind me to breathe, to walk, one step at a time.