Progress is painfully slow… Emerson remains in the PICU – some things are maybe a little better, others maybe a little worse (or at least requiring more support). Overall the sentiment in rounds today was that we’ve made a little progress. That’s good, of course, but I’ll be honest – I’m having a hard time seeing how this all pulls back together for Eme. The comment made this morning was that Emerson more or less lives her life standing on the edge of a cliff (or hanging from her fingernails as the transplant surgeon professed) – one thing tips & it all falls apart. She “looks” good &, for the most part, she feels good. That’s the really good news. Looks, though, can be so deceiving. The level of support (mostly IV drips, meds, lab draws, and electrolyte replacements) she’s requiring to “look” good is confining her to a bed in the PICU & will continue to do so for a while at this rate.
We feel so blessed to have Emerson with us and equally blessed that she continues to smile and tell stories of her puppy Bella through it all. It is painfully difficult, though, to accept the price we all pay (including her) to attain it. I wouldn’t have it any other way, but that doesn’t make it easy. As I face another holiday spent apart from family, I am reminded that life goes on & I’m sad that, again, it will do so without us.
As Emerson & I sit in Omaha, we open our home in Colorado, today, to 2 boys/young men from Finland – both players on Collin’s hockey team this year. They’ll stay with us through Thanksgiving and a series of games the weekend afterwards. I’ve been planning and preparing (& looking forward to) their stay for a while now and am incredibly disappointed that I’ll be over 600 miles away through it all. I’ve reached out asking for help with meals and am very touched by the response – thank you all so much! I feel so blessed that you continue to walk this path with us, and that you so graciously pitch in to get it done when I cannot. Thank You!
And another giant Thank You to the students/families/staff at Kilmer Elementary School. Emerson’s class sent her a big box of goodies this week, complete with pictures & hand made cards (and an Elsa Build A Bear). They said they wanted to “make her smile” & they accomplished that in a big way!! She was so excited & misses everyone there so much. Rest assured she is doing everything in her power to get back to you as quickly as possible. She talks about it every single day!
Evening update: & just like that, all little progress has been lost 😦 We started a very slow drip of intestinal feeds this morning and Emerson failed miserably. Back to gut rest through the weekend. Sigh…