Gerardsmomutah

Gerardsmomutah: Post op

We've been home from Mayo almost a week now. I miss it already. I miss the professional friendliness, the transparency of medical records, doctor's notes and the seamless way the system works administratively. I miss waiting "standby" to get in when we need to get in, and I miss the maximum allowed family members in the clinic. It's a crammed space here. I miss the overall seriousness that we have a kid who is sick enough to be in the said space to begin with. And I miss people looking me in the eye to talk to me = not a computer screen while we discuss why we are here and what happens next. What happens next? We wait 3 weeks for a test. And then we wait some more. Because as usual, Gerard doesn't "look" sick on the outside. Except they can't see that he's blistered and sunburned under his t-shirt. Because the sun penetrates the sunscreen and the tee and he burns because of the medication he takes. All before 9:30 am. Two layers...

How is it that providers know you are paying for medical care out of pocket? You're referred to as a "9" or an "8" or another secret charting system, which, if you're anything like me, you crack the code immediately by looking left and right, and listening to comments.  We aren't alone. Half the folks we see are paying themselves. This is s last resort spot - think "destination" healthcare where they are expanding! It's on the front page of all the papers. Genomes, biomes and hormones. Everyone who works here is sharply dressed, educated and polished. Reputation is like the Ritz, Disney and The Met all rolled into one. Let's face it, the art here is worth the trip. I digress... Mayo. Where the world comes for amazing, state-of-the-art care. Where you may wait, like us, a fifty with an 8-yr. old for five hours (yesterday), to see someone as a "standby" patient (called, "checkers") and not see anybody. Because, as it t...

Having the kind of talk we had today is not something I've ever prepared for, even under our circumstances of "sick" mode over the past year. We leave for Mayo tomorrow, and Gerard has been so very tired since his chemotherapy treatment. He sleeps a lot. His time awake is spent going full blast - and he's wearing himself right out. Here's why... G-ism of the day: G: Mom, what would you do if I died, right now, today? Me: I would be very, very sad. And I would think that God must need you more than I need you right now, today. (Tearing up, gulp). What would you do if I dided today? G: I'm not sure I could live without you. I would miss you too much. I would be so sad. Let's not talk about this right now, OK? Me: OK. Is there anything else you wanted to ask me? G: I'm going to take a rest now. If that's OK. Please wake me up in an hour. OK? Me: OK. That's a great idea. I think the "birds and the bees" talk will be so much e...