We have been home a week now
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...