A big part of what makes life with a condition such as HLHS bearable are the people who come alongside. There are plenty of frustrations, disappointment and tears–let’s face it, the whole circumstance is regrettable–but, within these challenging circumstances one has to keep focused on the blessings and touches of grace. There are so many people who have lightened the load and, sometimes even with just the smallest act, have made life brighter and reaffirmed to us that we aren’t alone in this. I don’t think we could ever mention all of you, but there’s two that struck me recently.
This handsome guy is Mike Champion, our insurance guy. His life’s work revolves around Risk Adjustment Factors, Provider Networks, deductibles and disclaimers…and somehow he’s not only sociable, but upbeat and positive most every time I see him. Part of dealing with a critical health matter is dealing with insurance, billing and the like. That can be stressful and unpleasant, but Trish and I have often voiced our gratitude for the medical coverage we do have. I could never have foreseen our personal circumstances back when I was working with Mike to set up our employee benefits plan. As we’ve since watched enough families not only have to deal with the realities of having a sick child but also have to contend with incredible financial stress, we’re so grateful for Mike’s ability to think ahead and make sure we had the right things in place. He and his able sidekick, Betty, have also proven to be very effective advocates for the times when we have one of those statements that just won’t get straightened out. Mike was able to tear himself away from the spreadsheets he loves so much recently to come over and meet Rudy. So grateful for heros and friends who do so much behind the scenes.
Next up, there’s our neighbor, Janelle, who also happens to be a hospice nurse. Whether she likes it or not, she’s one of our home health care consultants. Recently, she also proved very adept at resource procurement. You’ll recall my post a few months back about the innovation of Rolf’s Wonder Humidifier. You’ll recall that my quest for invention was driven largely by an aversion of having to deal with our home health provider (crApria–forgive me) as requests like this involve inordinate amounts of time, phone trees, faxes they “never got”, and shipments of the wrong thing.
Well, Janelle was taking care of a patient recently when a crApria driver showed up with a delivery of respiratory items. On behalf of Rudy, she displayed her trademark charm and persistence and went to work on the driver. Turns out he had the bubble humidifier we had been longing for on his truck–(who’d a thunk?–those huge trucks they drive around in are actually stocked with commonly required home medical supplies.) We’re not asking too many questions about how the usual demands for paperwork were bypassed, but I’m keeping Janelle’s number handy. Maybe she’s good at getting tables at famous restaurants or prime seats at sporting events.
I confess there’s some pride that’s keeping me from taking Rolf’s Wonder Humidifier offline, but I guess it’s good to have the actual part we’re supposed to have on hand. Thanks, Janelle!