Elizabeth Update

Yesterday, on the first day of spring, we celebrated with a trip to the park. The park is where, as Matt puts it, "The borders of Holland and Italy get really close to one another." (we know of course the two can't be neighbors...but if you're familiar with our trip to Holland metaphor then you know where I'm going with this (if not, you'll find a link to the poem to the right)) At the park, Elizabeth is so full of life and joy and delight. She plays on the swing, navigates the wood-chip terrain and climbs around the play structure with excitement and a distinct lack of fear. She is absolutely thrilled to be at the park. When we're at the park, it's easy to forget about her clot, her g-tube feeds, her muscle weakness and fears about her future. I love going to the park..Peeking over the fence at Italy, enjoying some good pasta and yummy wine, (Okay, Matt enjoys the wine, but you get my drift)...Feeling normal.

 

And while so many things are going well with Elizabeth--she's growing, she's getting stronger and more steady on her feet, she's learning signs and songs and parroting everything we say, she's throwing up only infrequently now, and since her hospitalization in late February, has remained "bug free"--I was reminded during a recent conversation with Matt, the future isn't perfectly clear for Elizabeth.

 

Rather than spell out all the possible challenges she faces, we'll just give you the bottom line.

 

Elizabeth needs a major miracle.

 

She can't live for long without healthy collaterals (blood vessels) to divert blood flow around her clot. She doesn't seem like a good candidate for a shunt procedure, and thus we're looking at a transplant. I'd been living in a bit of "la la land", comforting myself that if nothing got worse we might avoid a transplant. But the reality is, if things don't change, a liver transplant IS the outcome. If she gets worse, we just move things up. And while a transplant is a good way to save her life, it doesn't give her the life we want for her. A transplant means she'd have to live on immunosuppressants to keep her body from rejecting the liver. (Think HIV treatment) Immunosuppressants would mean she'd be much more at risk for little bugs causing major problems (as if we haven't seen enough of that with her already!) Any fever would mean a hospital admission for IV antibiotics...

 

So we need a miracle. The clot is completely scarred over, there's no chance of it breaking up...unless God plows through it. We have an endoscopy scheduled for April 21, so we'll get to take a look at her collateral veins. All the outward signs show that they are still under tremendous pressure, and the primary treatment for leaky or bursting collateral veins is to cauterize them...which just puts the rest of the veins under more pressure.

 

Would you join us in praying for a miracle? A parting of the red sea, raising Lazarus from the dead, feeding the 5000 kind of miracle?Underneath that delightfully sunny disposition, is a body that is broken and severely in need of repair. The same God who raised Jesus from the dead and gave us hope of eternal LIFE can heal Elizabeth. We'll just keep asking.

 

Happy Easter. He is Risen! He is risen indeed.