Feb. 16, 2016, 11:35 p.m.
Tonight is the sixth consecutive night in the hospital. Aila's fine, for the most part. She had a fever the first two nights and needed another platelet transfusion and a red blood tranfusion. A virus panel confirmed that a metapneumovirus, an upper respiratory infection with cold and flu symptoms, caused her fever. But for at least the past 72 hours, she's been fine with the exception of being unable to leave her 10 x 12 hospital room and being connected to a pole that's plugged on one end into the wall and into her chest on the other. And you know, she hasn't got a ton of white blood cells, which should come as no surprise to her doctors since they administered the cell-destroying chemo in recent weeks.
In the ER last Friday morning at 1am, Dr. ER Hotshot #1 told Brian that we could count on being hospitalized for at least a week. By 2am, Dr. Oncology Hotshot #2 had told him that we would likely be here until the end of the month. On Saturday morning, Dr. Weekend Oncology Hotshot #3 told me, with a grave gimmace, that it was likely to take "some time before even talking about discharge." But by Sunday morning, #3 had changed her tune, saying that if Aila's monocytes and neutrophils had climbed by Monday, then we could go home. And on Monday morning, all her counts were climbing. (Yes!) But #2 had also returned, brandishing his "Hospitalize! Hospitalize!" flag. It took him a 3-minute visit with Brian to override #3 (oh #3...sweet, dear #3), dashing any hopes of discharge.
If I could draw something here to illustrate our emotional upheaval, I'd draw a roller coaster with peaks and valleys the size of Everest and Danali.
Here's the thing that I want to say to all Hotshots (#1 through #gazillion) in this hospital and hospitals everywhere. I love my daughter more than you ever will. I would never in a blue moon push for anything that I thought would put her at risk. Every single time she has gotten even a hint of a fever, we have taken her to the ER. You can check your charts...we've been in the ER 7-8 times since September. We've dropped everything, changed our lives and our schedules, neglected our other kids, and come to the ER. So if you send us home with an afrebrile kid, we WILL come back if she gets another fever. And further, we're more or less pretty reasonable people. If you provide us with a consistent, reasonable argument for why you think she should stay in the hospital, then we'll get on board. We might gripe a bit, but Brian and I at our core are rule followers. A couple of "good kids" who did our homework and didn't start breaking rules until long into our twenties. But inconsistent stories (i.e., monocytes above 100....no, wait, neutrophils above 500...just kidding, neutrophils above 200 are fine...ehhhh, I don't know, neutrophils above 500 are better) and lack of a compelling rationale (i.e., her fever was certainly caused by the virus, and her bacterial cultures haven't grown anything....but you know, you just never know. better to be safe than sorry.)
Safe for whom? That's my question. Aila? If she gets a fever, we have demonstrated that we will take her immediately to the ER. She's now cooped up in a hospital room for the 45th night (!!!!) since August. Forty-five nights of no family and no sun and no childhood! Safe for Zander, who has seen his sister once in the last seven days? Who is so scared when Daddy and Sissy are in the hospital that he wants to sit in the bathroom while I shower "just to wait for me?" Who sleeps curled up in our bed next to whichever parent is home? Or maybe safe for Declan? Sweet, empathic Declan, who is so dysregulated during these hospital stays that he literally sleeps until noon most days and cries much of the time that he's awake...certainly not Declan? Maybe safe for Brian and me, then? So that we could, again at the last minute, rearrange our work schedules for the 28th week in a row and do most of our work late into the nights and early mornings? So that we could lose more time together as a family that we'll never recoup? And so that we can fight a bit more often, literally feeling like we are exploding a tiny bit more (is that possible?) under the weight and stress of this enduring trauma, with its million moving parts?
Pediatric patients, by and large, are attached to families. And Aila needs her family. If that family breaks...cracks in half or into a milion pieces...because just one more stressor is added onto the mile-high pile... Well, Aila may have been saved by an evidence-based, mutli-year chemotherapy protocol, but something else has unequivocally been destroyed in the process.
Note: I sat down next to Aila on the hospital bed tonight intending to write something humorous. But somehow when I start writing, I cannot mask what I truly feel.
Comments
Sherrie 8 years, 9 months ago
My dearest Vic,
Link | ReplyThough you inherently have such a wonderful sense of humor, I think I speak for everyone who reads your blogs that there is never any need to try to shield us from just how (pardon my French) fucked up this whole thing is. It sucks balls. (Pardon my French again -- wish I knew how to say that in French but all I've got is Merde! Conard!)
You're so right. I feel as though we've talked about this before (but in the context of when you were pregnant with Zander and doctors were telling you what to do -- the guy with the beret?), but while I respect the gazillion years of schooling these hotshot doctors went through (god knows I couldn't) to earn their fancy MDs, they don't know you as well as you know yourself. Or, in this case, they don't know your family as well as you do. You are and have always been the strongest fighter for your loved ones -- it's honestly one of the many reasons why I admire you. And I hate hearing that people are making you feel in any way that you aren't. (I really wish I'd been there for you when that nurse practitioner accused you of over-medicating your kid. If she knew anything about you, she'd know you're the last person who'd do that. Give me her name, I'll exact some sort of Amélie revenge on her.)
Anyways, I love you dearly. I'm really hoping to come see you and the babies at some point this year. And then, I think I'm just going to hug you for an hour like a spider monkey, and the kiddos will wonder who that crazy Asian lady is (per usual).
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