Building Routine: This one will be an ongoing challenge, and will be critical to managing the extreme change we’ve experienced. We were in a really good routine at home, and it’s been hard for us – especially splitting up at night. We’re focusing on advocating for Lucas’ sleep with the constant interruptions, as well as building some stability for Addy. So far, Corey has been consistantly putting Addy down for her afternoon nap and night bedtime at the Ronald McDonald house, where she’s also staying nights. I’ve been staying at the hospital with Lucas. If you know us at all, I’m the one who can sleep through the beeps, noise and constant interruptions, and getting Corey as much sleep as possible is a priority. Lots more to come here as we work towards foundation in our schedule. 

Support & Visitors: It’s hard to fully describe how blessed we are with our support network. This of course includes our immediate families & friends, but we’ve been absolutely blown away by how far this network is reaching. I’m guessing that there’s a lot of folks reading this that we’ve never even met before, praying and supporting us (and supporting our supporters!). Thank you.  I’m realizing as I’m writing this that there’s too many names to list that have been here to help us however we’ve needed it. Both of our sets of parents, our siblings, local family – it’s been so great.  We’ve recieved so many generous offers for support, and know so many that would literally do anything we need at the drop of a hat.  Frankly what we’ve needed the most is childcare – helpers to be with Lucas when we need to step away, and someone to play with Addy when we need to focus on Lucas or medical conversations. And a break from both to connect for a minute. It’s amazing to experience so many people reaching out connect, reconnect, and offer help as our needs change or grow.  We’ll be working on coordinating a visitor calendar, so if you’re thinking of visiting let us know – unfortunately surprises aren’t great in our current situation.  We’ll need to be honest about our capacity and the number of visitors at this point.

Insurance and Finances: I wouldn’t allow this topic to enter my mind until the dust settled a little, but it’s certainly a part of the thought process now. Of course, no matter the financial cost – all we care about is what’s best for Lucas.  What I quickly realized is that there are both direct and indirect costs for us to think about – and both short and long term. Regarding insurance, I can just say that I’m  extremely grateful that my employer supports such an unbelievable benefits program. They pay 100% monthly premium for quality insurance covering my whole family, which is rare.  My out of pocket annual max is reasonable, no deductible, and no lifetime or annual policy cap. The transplant team has a financial coordinator who is responsible for preauthorizations, and has already been going to work for Lucas. She said she hasn’t had too much trouble with our insurance provider in the past. All good stuff – of course I’d fear (and still fear) the “gotcha”, but we’ll expect and deal with that as it comes.  As far as short term direct costs go, confirming what to expect out-of-pocket for insurance in 2019 and 2020 helps our planning. There’s of course costs with maintaining a household in Vancouver and making it work here. The Ronald McDonald house certainly helps, if we had to pay for long term hotel or condo, that’d add up QUICK in the University district of Seattle.  Indirectly, the major short term impact to us will be lost wages from unpaid FMLA leave, and Corey leaving her part-time mental health therapist job – which, again, we’re prepared to manage to a point, and will deal with as it comes.  I’ll be communicating with my management team ongoing as things settle here on remote work options, timing etc., of course secondary to any Lucas (and Corey/Addy) needs as they arise.  Long term, there’s a lot of uncertainty what this means with direct/indirect insurance and finances. Lucas will require meaningful follow up care and specialty medications for life. There’s risks of insurance changes, legislative changes (Medicaid & ACA), and the greatest risk is complications with Lucas’ new heart and future hospitalizations.  I’ve had a lot of folks ask if they could contribute financially, and at this moment, I’d say not yet. I wouldn’t want to accept something we don’t need on Lucas’ behalf. That said, it’s becoming clearer to me that setting my pride aside and allowing others to help build a support fund for Lucas lifetime care could be very beneficial for him. 

Being unexpectedly and urgently uprooted for a child’s health crisis isn’t something any parent would choose, though any parent I know would embrace it without a second thought. This is certainly a challenging road, but we can’t help but remain hopeful. We appreciate all of the support, love and prayers.