London is ok now. So I can write about this now. She started wheezing Sunday morning and by 9 that night it was uncontrollable. We checked in at the ER at one of our two local children's hospitals (we are so lucky considering the size of our city that we have two excellent children's hospitals) around 10:30 that night.
*Easter night in a children's ER is surprisingly empty.
*Children's hospital's nurses in the ER are nice but registration staff are as gruff as they are in normal ERs.
*A staff doctor with a stutter makes me want to assist her in communication.
*Time passes both quickly and slowly. The moments drag but the hours fly and I don't know how I made it from somewhere around midnight until 4 in the morning.
*Twelve year olds do not want you to take their picture when they are in the ER.
*It's been so long since I had my first IV, and I've had so so many since that first one, that it was hard to live through her as she got her first one. Especially when the first line blew and the nurse got a phlebotomist to do it again and there was blood all over the bed.
*Twelve year olds, however, can be notional and like the idea of hospital beds and how they go up and down at different spots and wheel around and raise up and have rails and so forth. Very entertaining.
*Being told that your child is going to be hospitalized isn't actually that bad.
*Being told it's the PICU is devastating.
*Calling your father, the former ER nurse, at 7:30 in the morning while you drink a cup of coffee the social worker got you a voucher for and hearing him say: "The next step is they will intubate her" destroys you.
*And then when he walks into the ER room and you can tell how worried he is, then you know for sure. This whole time you've been thinking a breathing treatment and then we'll go home. Ok, three breathing treatments and then we'll go home. Ok, magnesium and then we'll get a room and they'll observe her the rest of the night. Oh. Oh this is happening. My child is dying.
*Children's hospitals are both grim and cheerful. I've been to both in town before for appointments and MRIs and whatnot, but PICUs are only grim. So many people. So many upset serious people. London was in room 28, and to get to her room I had to walk past all the other other rooms (hers was the last on the floor). There was a secret back exit I could leave through, but to come back I had to walk past every single room. A gauntlet of human misery. Hallways filled with equipment and cabinets and trash cans and machines.
*They break news to you in bits, although I already had hints from friends over text who knew ICUs and children's hospitals and emergency situations. But the biggest bit was status asthmaticus. Asthma that won't break.
*After being awake 27 hours, a single hour's nap in a parent lounge while my father paced back and forth is frighteningly enough sleep.
*People help. Meals were made. My house was cleaned. Brooklyn and Niles were fed and cared for. My phone wouldn't stop dinging from text messages and facebook responses.
*I am very very lucky. For two reasons, one of which I'll get to later, but the reason I saw and felt palpably in the PICU was how lucky I was that my child was well. That all three of my children were ok until that moment. Many sick, many chronically terminally sick children shared my living space those three days.
*Finding yourself texting a friend that you are afraid your child is going to die and then following it up with "I haven't gotten enough time with her yet" breaks your heart open as you realize how much of life is totally out of your hands.
*Having to tell the story again and again makes you relive it just a little bit and your heart races.
*For some reason this continues even days later. Your heart doesn't stop racing.
*Getting downshifted from the PICU to a pulmonary floor is a huge letdown in terms of staff attentiveness. It's like moving from a Ritz Carlton you never wanted to go to, down to a Quality Inn you can't get out of.
*The Ronald McDonald Lounge is absolutely amazing.
*A good nurse and a child life specialist can make a huge difference for your kid as she gets well enough to be bored but not well enough to go home.
*Going home is a huge relief and also overwhelming in a whole new way. And your heart doesn't stop racing.
*Sitting on your dad's front porch the next evening as he pours you a glass of whiskey with a splash of water and he starts a sentence with, "I can say this to you now..." is a really hard moment. The rest of that sentence is "Status Asthmaticus is one of the three true lung emergencies, with embolism and edema. I've seen people die of this." You know you're going to carry that around with you the rest of your life. The rest of your life, and anytime you hear your child wheeze or cough, your heart is going to stop.
We are home. She is well. All is once again right in this corner of the world.
And I'm terrified.
I gasped aloud when I read what had happened earlier this week (we were visiting T's father just diagnosed with leukemia). I can't imagine. Been doing my version of praying since. Happy she is well again. Praying she always will be.ReplyDelete
And on a completely writerly note, this bullet: "Getting downshifted from the PICU to a pulmonary floor is a huge letdown in terms of staff attentiveness. It's like moving from a Ritz Carlton you never wanted to go to, down to a Quality Inn you can't get out of." Perfect description.
Will continue to keep you close.
I'm so sorry you went through all this, and that you continue to deal with the aftermath. I haven't had to go into a children's hospital, but my sister spends a lot of time in one with Charlie. And I've visited her in a children's Ward. As you say, a happy and grim place. Also, the Ronald McDonald facilities are wonderful here too. Regularly my sister has to travel to the children's hospital in Auckland, and they stay in the R McD House. With CF, Charlie also has breathing issues, but they're chronic (at this stage) not acute, and terrifying must be the only word to describe that. All I can say is that you'll learn to live with it, add my sister does. Not a club you want to b belong to though, I know.ReplyDelete
Sending love and hugs.
You are a rock. And you are not alone. Not in your fears or in your prayers. I don't know if that helps. I hope it does in a very small way.ReplyDelete
My heart is racing after reading this... of course because of the content, but also because of the way you tell the story (something in the pacing, perhaps). I'm glad to hear that all is well physically, although I realize that not all is well on different levels.ReplyDelete
Also sending you love and hugs.