Thursday, July 23, 2015

Where Do We Go From Here?

My mind is overwhelmed, so bear with me while my fingers melt into the keys as I update on the latest.

June 6th-ish: Local ER. Told respiratory virus. Told fluid in lungs on Xray. Sent home to wait virus out.

June 13th. One point five weeks later landed in KC at the hospital. Fluid wasn't from a virus of any kind. It was fluid from her heart. In other words, showing signs she NEEDS this next heart surgery.

Admitted on the 13th, sent home on 1/2-liter oxygen and new meds, new GJ tube, and with the knowledge {finally} that there's no trach ring. Busted out on the 17th of July. Goal to rest until open heart surgery on the 13th of August. Holidays while in hospital totaled two: Father's day and Fourth of July. Sometimes we measure stays in terms of how many holidays we hit. Her NICU stay included May Day, Mother's Day, Memorial Day, Father's Day, Flag Day, Fourth of July, First Day of School, Labor Day and all this started less than one week after Easter.

We were home 5 days. Almost. Not quite. Flew back (literally, Chloe was air transported again. She loves that transport team) again to KC, this time for low sats. No other reason-just randomly low sats. Went from half liter to 3 liters of oxygen in less than 3 hours. More than 1 L is high for her. Took her to local ER again and waited on CMH transport team. Followed the ambulance on the route back to our house and had that amazingly awkward gut wrenching moment when you turn your car toward home to finish packing up and get to KC while your child goes off with trained strangers, heading up the hill and around the curve and on their way to the plane. This never gets easy. Or normal. Or routine. And yet...we knew the routine down flat. 

Got to KC and tested positive for...


Seriously folks, when we say we gotta keep her healthy, this is why. When we say we gotta hunker down during cold and flu season and we post article after statistic after breaking news on the above-mentioned diagnosis and possibly even offend people at the heightened state of alert for germs, this is why.  A common cold can land her in the PICU. That's Pediatric Intensive Care Unit. That's intense. From a cold.

So now where do we go from here?
...She needs this Glenn {{heart surgery}}. She was scheduled for 3 weeks from now and needed to be healthy for 2 weeks prior.
          >>Forget that idea!!<<

...She now needs to wait 4-6 weeks from the moment she's symptom-free before surgery.

But the question is where?
Where do we wait this out??

Anyone a fan of the infamous Pro//Con list? Here we go:

PROS to STAYING              //            CONS to STAYING
Pro: We're on top of everything. Any meds, any cough, any rashed bum, any change in secretions, any questions asked. Answered. Taken care of. She'd be 100% watched until surgery.
Con: Risk of infection just from being here alone, much less if she has to have lab pokes. 
Pro: We don't stress her out with back and forth travel. Rested up for surgery.
Con: Risk of picking up another bug. 
Pro: We get some rest before the big surgery. 
Con: If we're here that long, they might do another PICC line. 

PROS to HOME           //          CONS to HOME
Pro: We're home, she rests in her own environment. 
Cons: We're her nurses for 3+ night and day shifts and exhaustion has hit. 
Pro: No pokes. No PICC lines. No stressful sedated procedures. 
Cons: Risk of germ bugs at home and thus pushing back surgery even more. 
Pros: We're home as a family. We're together and not cooped up in a 10x10 room. 
Con: We're not getting sleep at home. 
Pro: She relaxes better at home.
Con: Stress of travel to and from. Possibly fly her back if she suddenly gets sick. Really watching for the shunt to make sure it doesn't clot off or stop working since it's so small. 

There's simply so many things to weigh into consideration. We've been here 5 weeks now, with the exception of that long weekend we went home then turned around and flew back. Surgery will be 4-6 weeks out from the day she's symptom-free of this cold. In other words, could be 4-6 weeks until surgery followed by another 4 weeks recovery. A.K. A. a LONG time to be in the hospital. 

So we pray. We wait for her to get back to her baseline 1/2 liter. We ask questions of the team to gain the best understanding of plan and direction. We remember that Jesus didn't have anywhere to lay His head, and His Father provided for Him, and we trust He'll grant us wisdom to know where to lay our head at night. We trust that although we cannot see, touch, breathe in, know His plan in all of this that He does have a plan in all of this. 

Please pray with us and for us while we wait and see where we go from here and how soon we can get her surgery rescheduled for, that she'd heal up from this cold and stay healthy here on out.


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