Tuesday, September 29, 2015

Day 99

Today is National Coffee Day, and I haven't had my coffee yet.

Last weekend we tried to rent a car for my husband to get back to our hometown for the weekend. Then realized the rental wasn't going to happen because they needed the actual business card, not just the information for it. Plan A fail.

Last weekend we ventured home for a quick respite, deciding to just all pack up and go as a family since Chloe was doing good, but instead of the activities we had planned while home for two days, I ended up in bed with a nasty virus, no energy, and a fever. And a marathon on Netflix.

Last weekend we also walked in our home to find that our dear, beloved family pet had passed away. We had a mini immediate family members only memorial and burial. We were caught completely off guard, and there were many tears while burying the cat that I'd gotten when still in high school. Instead of a fun pumpkin patch with the kids, we stood in the rain that was gently hitting all the memories of our pet and explained death to a five and four year old.

Last weekend we decided to come back on Monday since I was still worn out. Then we found out Chloe wasn't doing very good and dropped into the 40's at one point. We flew around the house packing back up and diving into the car to get back to KC in record time so that Alan could go help with Chloe.

Today is Day 99. Well, we were home for a total of 4.5 days this summer, but since we were constantly on the phone with Chloe's team, we were basically still connected together in this through those days. So it's Day 99. I'm 36 hours fever free from a bug I didn't expect to tackle me down. The kids are playing with home-made paper light sabers and minimal toys in a room containing only two beds, a night stand, a desk, and a bathroom that we've lived in together for over the last month. They're probably on their 99th juice box of the stay as well.

Chloe continues to throw us for loops and whirls, spins and turns. One day good the next day not. One week of progress, one week backwards. I could go into all of the medical jargon of where we've come since surgery, which by the way went swimmingly and she did amazing with, but I'd be talking myself in a circle because of the loops she's thrown us and wild goose chases we've tried. It's been the series of infections and trying to find the delicate balance of ventilator settings that's been the hold-up. One day we have the right settings and she's happy and we start weaning, but the next day she's decided she's too much of a diva for those settings and doesn't want to play well with the respiratory therapist changing her settings.

We could go on about what's going on in her little body, but truth is, it's so incredibly layered and we're all just trying to stay one step ahead of her instead of two steps behind her. I know this all sounds vague and are probably wondering about more details or why this is dragging out so long before we get to go back home, but the truth is, it's not our timeline. Just like the above examples were not our timeline. We're not out of the woods yet. We're concerned about her extra fluid. We're worn trying to calm her when sedations or meds wear off. We're frustrated when things that could help her are getting overlooked (hence why we're all here, trying stay here and help her). The good news is her initial surgery went great, it's just that the recovery road isn't paved. It's a bumpy off-road one. It's more like a cobblestone path with grass sprouting between the stones than newly paved asphalt. We've done our best to update, but honestly, there are days we don't know how to sum things up. "Did she have a good day?" is hard for us to answer sometimes. In the big picture, she's here and fighting, so yes, it was a good day. But she was restless, demanding someone (usually Daddy) holds her hand, and begged the nurse for more sedation meds. There are good days too, though, where she'll open both eyes, suck on her hands or try to yank out her brand new teeth. Where she still finds a way to kick off her saturation probe or throws her taggie around, or smiles when she pees on you the moment you go to change her diaper. Last week the bad outweighed the good. The last few days she's held her own much better but still looks worn. Hopefully by this week we can figure out better settings and see if there's anything else bugging her. Literally. She keeps spiking fevers, but all cultures are coming back clean.

Although worn, and although, to be real, there are days we need a break and we need an escape or we'll lose it...where we need out for two minutes, or two hours....we'll still continue on and embrace Day 100 tomorrow with tired but hopeful hearts. We didn't expect when we started this in late Spring that it would continue until October, but we're here. It's fall. We march on, through the falling leaves, and pray that we gain the wisdom we need to help her continue to improve, and we pray she can be home by the end of October. That's our new goal, at least.

Because even though our plans changed, and we weren't home within a couple weeks of her surgery, or that nothing this summer, or even this last weekend, or the last year...or two...went the way we planned, we know that the One who holds our steps is on this cobblestone road walking with us. Right beside us. Ahead of us. All around us. Because if we were left to direct our own path through this, we'd crumble. The only One lifting us up through this is Him.

Proverbs 16:9 says, "In the heart man plans his way, but the Lord establishes his steps."

He is sovereign over all.


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