The Funny House

It turns out that yesterday's illness was a blood infection, likely caused by bacteria getting into Cora's central line. She had a rotten night, and a pretty rotten day, but tonight she seems to be more peaceful. Hopefully this means she is responding well to her antibiotic cocktail. Until the infection clears, she will get daily blood cultures to reveal exactly what type of infection she has, and this will guide how best to treat it. Until then it also means we will not be able to transfer to UCSF.

Cora had been so sick last night that they stopped her feeds, but they just restarted them now. Unfortunately they had to replace her NJ tube, which she did not appreciate. She also just got ten medications on an empty stomach, so we'll see if she can keep it all down.

Needless to say, today was a very frustrating day, on the very frustrating continuum we seem to be stuck on.

This morning I was "on the war path" (Jason's observation of me.) I was just so angry and agro over yet another thing happening to Cora -- one that seems like it could have been avoided -- when she already has so many things to face on her own. I'm mad that we are stuck in this limbo land in between two institutions, and that now we're stuck for even longer. I'm mad watching Cora struggle. But most of all, I'm mad that at three months into this hospital stay there really aren't any outward things about Cora that seem very much better than they did on the day we were admitted. And we don't have any things that are being actively investigated that might explain why she is struggling. And more importantly, we don't have any plans for what we're going to do to make her better. And now with this recent infection, Cora needs additional support, and I just don't feel that anyone is there to give it.

There. That is my rant.

I tried to rationally give my rant to a doctor today. Not just about this infection, but about how many things about Cora, and about all the conflicting things we've been told, don't make sense. He looked at me politely and curiously, as though I were a strange specimen from another planet that he'd be interested to study. I wanted to shout, "I am a very reasonable, intelligent person! I am not from the loony bin!" But what I instead said was, "I feel like Cora is trying to show us that she needs help but no one is paying attention. How can you explain everything that seems to be wrong with her?" In the end, he really didn't have any answers, and when he left the room I just felt a little deflated. With no answers and nothing to feel great about, Jason and I then did what any parents in our situation would have done: we went to get a coffee.

A lot of the time I feel like I am in a funny house, disoriented and confused, and I keep asking everyone I see how I can get the heck out of here, and they all smile politely and point in a direction. But when I go in that direction, I ram my face into something hard, only to realize I am in a room filled with mirrors.

I sometimes feel like the doctors have all the answers locked in a box somewhere, but they're just not sharing them with me. I guess the reality is that there really is no secret box, and instead just a pathetic shortage of answers. I wish I could find them. I wish I knew myself how to help Cora and could just bust out of here.

I guess it's time to take a deep breath. I have to say after writing this all that I actually feel much better. Yes, there is Frustration Nation. But then there is also the rather pudgy little person who is right now sleeping in the frog position on my lap.

It must be an incredibly sweet god who put her here, right in this moment, to snap me out of my cerebral adventure and quietly remind me that all is well, and exactly as it should be.