The Umbrella Effect

We are never getting out of here.

Emerson continues on lots of IV support. Twice they’ve tried to turn off her PICU drip – the first time she lasted about 15 minutes, the second time hours, but not long. She’s back on vasopressin this morning to control excessive urine output and resulting electrolyte imbalances. Add to that increased ostomy output from her transplanted bowel, and managing Eme’s fluid balance continues to be a very big challenge. Basically her transplanted organs (kidneys and bowel) are in abundant overdrive, wasting excessive fluid & critical electrolytes.

To illustrate the degree to which Emerson is struggling: average & acceptable urine output for her is roughly 50-70 mls/hour; her kidneys are excreting 500-700 (even up to 1,200) mls/hour. Her bowel output is over triple what it should be and significantly increased over her “norm”.

The infection that brought Emerson in is a distant memory. The resulting organ fall-out from the infection, though, is proving to be the hurdle we can’t jump.

Many really great doctors are involved and no one knows what to do. I just had a lengthy conversation with a senior endocrinologist here and he stated the rather obvious – Emerson is extremely complicated. He said they’ve been discussing her for a month, and she is the most involved and puzzling case he’s seen (and he paused)… in a very long time, if not ever.

It’s August 1st and this week marks 4 weeks inpatient. Bradley embarks on a new academic/athletic adventure in 14 days and Collin is off to college (yikes!) in 18. We have to get home. We had a few weeks, but time is up. We desperately need to get home.

In a nutshell, we’re never getting out of here. It’s the umbrella effect – you plan for rain, it doesn’t come; you don’t plan for it and it does. So, I’m shaking things up a bit. Maybe planning to be here forever means we’ll actually get out. I don’t know… thinking she’s going to discharge “next week” hasn’t worked. Maybe this will. Ugh.

4 thoughts on “The Umbrella Effect

  1. Holly guacamole that’s a lot of pee and poo! No wonder her electrolytes are bonkers. Bless your heart and hers too. I hope she doing good mentally. Not too upset being there and not feeling punyor grouchy. I know I would be grouchy. That’s way past my patience limit.m! I will be praying for you guys to stay there and not go home. I’m using your umbrella effect mentality! 🙏❤️ (I can’t pray for that. Sorry. I thought it but couldn’t pray for it.😢)

  2. Erika, it broke my heart to read your new post and I shed tears thinking about this important time you’re missing out on with your boys. I’m so
    sorry and just so sad for you. I’ll be doubling up on my prayers, praying they can get Emerson stabilized so you can get home.

  3. I hope today your umbrella theory works….or least things are more hopeful. I was so sorry to read how bleak it seems right now, but you both will be getting out of there! Emerson will surprise everyone…..again! Can’t believe you have a son that is going off to college. How exciting for him and everyone. My prayers always for you both to get home as soon!

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