Sick again

It seems that my last post a few days ago is no longer relevant as Waverly is sick yet again. She started coughing constantly yesterday evening, to the point of throwing up, and coughed all through the night. She required extra oxygen and was on bipap for a while as well. She threw up again this morning and other than waking up to cough and have seizures she's been resting. It breaks my heart to see her like this yet again.

A Real Conversation

K (6 years old): "You should stay home with Waverly tomorrow cuz you know all that medical stuff."
Me: "But daddy knows how to take care of her too."
K: "Yeah, but he forgets to go to CVS."

Christmas picture dump

These pictures are only almost 3 months late, but still cuter than ever. Enjoy! 

A month

Wow, it's been a month since the last post. We are just doing "normal" life here: doctor's appointments, breathing treatments, snuggling, enjoying sunshine, soaking in every day and every minute. I have had many thoughts and much desire to write, but by the end of the day, my thoughts blend together and just can't seem to be formed into a coherent, communicable thought. So, for now, this is just me, checking in to say we are still here, we are still thankful. 

Back Home

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.