Feelin' rough

Waverly got really junky this afternoon and has been coughing a lot tonight. It's a little before 1a.m. and I'm rocking her right now. I just gave her her second dose of morphine. She's acting very uncomfortable like she needs to vomit so I'm scared to leave her room and she keeps startling awake. Her breathing had settled a bit but her saturations are still low and she's on 5 liters of oxygen (I took her bipap off in case she did vomit so it wouldn't push it back down into her lungs). 

Thankfully nights like these aren't too often, but they are really tough when they come. It's always a reminder that even when she's having a good few days or weeks, her life is just one sickness away from being over. And it can happen so quickly. 

Please pray for our girl. I am not sure if it's her tummy bothering her or her lungs or what. Pray that the meds and interventions help and that she's able to go back to sleep and rest and stay home. 

Formula switch and UTI

Last week we decided to try to switch Waverly to a new formula I've been wanting her to try. It's made from real foods, which I liked. We did two days of half old, half new formula and have had her on the new stuff since. She seems to be tolerating it well. Her stomach is much less distended. She is pooping less, which we will have to keep an eye on and stay on top of. 

We also noticed that her urine had been looking pretty bad when we cathed her at night. So we got a sample taken and it grew ecoli so she's on an antibiotic for that now. 

We've also noticed an increase in seizures, including the kind where she stops breathing. I'm not sure if it's due to being off the ketogenic diet or the uti. So please be praying about that. I hope it's just because of the uti and they will decrease once she's done with treatment for that. 

Happy Easter!

Happy Easter! 

Build-A-Bear

At Christmas time, a sweet friend gave our family a gift certificate to Build-A-Bear. We were finally able to go last week and use it. The kids had a BLAST!  They loved helping Waverly with hers. Afterwards, we all went out to eat at Cheddars. As we were enjoying dinner, Johnny and I realized we couldn't remember the last time we did something like that all together as a family. It was such a special evening. Enjoy some pictures from their special time out. 

Spring...

...makes me haaaappppppyyyyyy!!!!!

Heart Thoughts

"You do realize that this could be 'it', right?"

"Yeah, I know... But it's probably not..."

And so we set out on our dinner plans for the evening. A place about 15 minutes away where kids eat free on Monday nights. The weather was nice and warm, and we thought it'd be fun to venture out for dinner as a family since our oldest was on spring break.

Just before it was time to leave, though, we noticed that one of Waverly's pupils was dilated and not responding to light. We weren't as alarmed since that had happened back in the fall, when we figured she got one of her nebulized medications in it somehow. But the other possibility if it wasn't an accidental mist of medication too close to her eye was serious. A "blown pupil" can also indicate a serious brain issue: a brain bleed, herniation, or a stroke. Any of those options would likely mean that night could very well be our last with her.

So the discussions started: do we take her to the hospital to get checked "just in case"? Do we wait and observe her for any other signs of a problem?

And so the realization hit us once again. Our lives are always on the brink of being transformed in a moment. What started as a normal day (for us) could end with her being gone just like that.

And while we knew the likely answer to this new issue was the same as before, we still had to face the possibility that it was a brain issue this time. We had to discuss and plan what our course of action would be if we saw that she was changing and indicating that it wasn't a simple bit of medication in her eye.

And reality came upon us yet again in a heavy weight. What seemed like a "normal" trip out for some dinner may be our last family memory...

Thankfully, she was fine that evening and through the night, as we woke up as a family of five yet again the next morning. But it's moments like those that remind us how very not normal our so-called normal days can be. And how very precious each day with our loved ones truly are.

Home!

Waverly was discharged from the hospital yesterday, and we are settling back in at home! She is up to full feeds, but is on a continuous feed at 40mL/hour. She's now completely off the ketogenic diet and is on Pediasure Peptide. At some time in the future I am considering trying her on a different formula made from foods. But for now, this is the easiest for her to process. We are still being aggressive with breathing treatments, and are working on keeping her and the older children apart as they have been sick with coughing, snotty noses, and fevers. (The middle one is on antibiotics now for an ear infection too.) I am taking the next few days to "dig out" in the house, reorient, love on all my babies, and recoup from a busy, tiring few weeks. We are hopeful that she will continue to improve and be back to "normal" soon.

For now, prayer requests are that she will continue to tolerate her feeds and new formula, that her seizures would not increase as a result of being off of the ketogenic diet, and that our whole family would be restored to health.