In the Mind of a Parent Who's Been Told Her Child Might Not Make It

9 a.m. I call the hospital from work to get a morning update. Things are OK.

11:26 a.m. The nurse calls to let me know they are going to put in a femoral and arterial lines.

This is not a good update.

11:31 a.m. I tell my husband (who was planning to leave work at noon) to call me.

I leave work, speeding like a bat out of hell.

I get to the hospital, and the situation is quickly deteriorating. Alyssa is in a sterile environment, two attending cardiologists are working on her and I’m told her blood pressure is too low. She’s in a really bad spot.

I make eye contact with one of the cardiologists. We know everyone on this unit. His look tells me all I need to know.

I ask the cardiology fellow if Alyssa is the most critical case in the unit.

He says it’s never a good sign when there are two attending cardiologists at her bedside.

I tell him that doesn’t make me feel any better.

I ask, “Is blood pressure a heart thing or a lungs thing?”

She has issues with both, and the vascular system is so closely intertwined.

A nurse introduces herself to me. She is interdisciplinary.

She is here because Alyssa might not make it, and she would help facilitate the calls/business that comes at that point. She doesn’t say this to me, but this is fact.

12:08 p.m. I tell my husband things are not going well. “If you have to get a police escort, do it.”

I send him the sheriff department numbers for the two counties he’ll drive through.

12:20 p.m. I text my parents. “She is not trending in the right direction.”

Nurse: “Do you need a chair?”

“I’m fine. I sit all day.”

I’m standing in 4-inch heels perfectly still as close as I’m able to get. My feet hurt, but if I sit I can’t see everything that’s happening.

Nurses and doctors are shuffling around everywhere as they are struggling to get the IV access they need in her groin area.

They’re using an ultrasound to guide the needle, but it’s not a quick process. Alyssa is a notoriously difficult stick.

There’s blood everywhere, a heap of blood-soaked gauze on a table they collected while trying to get IV access.

She’s covered in white fabric so only the areas they are working on are exposed.

The interdisciplinary nurse provides a narrative for everything they are doing and what’s happening. This is extremely helpful. Any word I don’t know, or drug I am unfamiliar with is explained.

Nurse: “If you don’t want to watch this we can sit in another room.”

I have seen her intubated in an emergency situation twice.

I can’t leave her.

They keep giving her bolus injections of a drug that increases blood pressure.

Her pressure spikes, then drops.

Nurse: “Do you need to sit down?”

“I’m fine.”

They continue to repeat doses of the blood pressure med more times than I can count. We ask if there’s a limit on this medication. There doesn’t seem to be, but we also can’t do this forever.

I start considering who I would have this nurse call and in what order. Do I give her my phone?

They add high alert medications. She’s not responding to them.

They add steroids, they change up her antibiotics, they replace nutrients like calcium and potassium chloride. Pharmacy is consulting with the cardiologists as they continue to add medications.

I’m watching the numbers.

Heart rate, oxygen, blood pressure, temp.

She’s not going in the right direction.

There’s nothing I can do.

The attending cardiologist comes over to talk to us. They are actually really surprised at how well her heart is performing. It doesn’t reflect the blood pressure. It might be the only thing helping right now.

The interdisciplinary nurse tells me they’ve added all of the high alert blood pressure meds they can. There is nothing else.

Me: “Are you telling me we could lose her today?”

Nurse: “Yes.”

1:08 p.m. I text my parents. “We may lose her today. There is nothing after the meds she’s on if she can’t compensate on her own.”

The pediatric surgery comes to consult. Alyssa is exhibiting signs of septic shock and acidosis, and they are trying to determine the cause. Big, scary words are thrown around. She’s not stable enough to have a procedure that can’t happen at the bedside.

The attending cardiologist is putting the surgeon through the ringer. They are going through every possible option of diagnosing what the issue could be without causing additional risks for Alyssa.

There aren’t any options. If the acidity of her blood doesn’t come down we’re going to be in a really dangerous spot.

Other nurses from the unit are putting together a new pole and assembling all of her drips so it’s tidy.

They are preparing a blood transfusion. Her 16th or 17th. I’ve lost count.

At this point the interdisciplinary nurse makes it clear we need to start considering at what point we would like to stop intervention.

She gives us the explanation of what would happen. CPR compressions in 2-minute intervals and she would be shocked after that. If we chose an alternate route they would get her situated in our arms.

My husband and I have two different end points.

I’m still standing. My vision stars to turn black around the edges.

Me: “I think I’m going to throw up.”

(Or faint.)

Trash cans appear out of everywhere.

Nurse: “Do you want to sit down?”

Me: “I think I should.”

They bring me one of the pink buckets you bathe babies in.

I still feel like I’m going to throw up.

How do I make this decision?

I’m looking at Alyssa through all the chaos. I hope she’s not aware. I hope she won’t remember any of this.

A doctor comes over and also asks us to consider at what point we want to stop intervention.

It’s in the form of “Obviously we’re doing everything we can to get her stabilized, but…”

I can tell from the monitor that this is serious. All I can do is cry into a tissue.

I have to pee. I’ve had to pee since I got here. I can’t leave her. This has been the fastest and slowest few hours of my life.

I tell my husband we’ll go with his plan.

The interdisciplinary nurse tells us we can change our minds even after they’ve started something if it comes to that.

2:01 p.m. I text my parents. We’re not at that point yet, but we have made the decision for when we would like to stop intervention.

X-rays and echocardiograms are done and read in real time.

The two attending cardiologist are finally done working on her. They move us to different chairs closer to her bed.

A nurse tells us we can touch her/kiss her, etc.

They are going to draw a blood gas in 10 minutes. If I want to get near her semi-uninterrupted, this is my opportunity.

I’ve had this feeling before. It’s the I-don’t-want-to-go-near-her feeling. She has something attached to every appendage it seems. I can’t hold her.

We’ve spent more than six non-consecutive months in the hospital. She’s been airlifted three times. She’s been on a ventilator multiple times. But today is the first time they’ve told me she might not make it. So yes, I’ll make my way over, but in my own time.

I cry as I try to compose myself enough to get to that point.

I grab her hand. She has so many poke marks from needles from days of getting labs. Her wrist is bleeding.

I wipe fresh blood on her sheets, which just adds to a few spots already there.

Me: “She’s bleeding out of one of her poke holes.”

A nurse promptly comes over with gauze and tape.

There is no privacy in an ICU.

I want to be alone.

I want to sing a song she likes to her.

I really just want to be home watching a cartoon with her.

I assumed death would be a quick and painless thing. A flatline. Like TV shows I guess. Instead we’re waiting on numbers to change, which will take hours to determine.

Her blood pressure is not going up. The interdisciplinary nurse tells me eventually her heart will not be able to maintain the way it has been if she can’t get it up.

I ask what the timetable will be. They are telling me about additional tests we will be running at 9 p.m. That’s seven hours from now.

I don’t want to feel a false sense of security.

And then, a glimmer of hope: the attending cardiologist says, “Is it my imagination or is she maintaining blood pressure for longer periods of time after each bolus?”

A nurse says, “It’s not your imagination” and gives her the timetable.

We wait.

Her liver and kidneys have taken a huge hit due to the amount of intervention required to get her stable.

Her lactate is coming down by tenths. But, it is coming down.

Alyssa doesn’t like to be rushed. Which makes emergencies that much more stressful.

Twenty-two hours later it’s morning rounds. Alyssa is stable but critical.

I ask if we’re first. We’re not, which means we are no longer the most critical.

The same cardiologist I made eye contact with yesterday morning says, “I’m glad we’re talking about all this today, and not what we thought we may have been talking about yesterday.”

I couldn’t agree more.

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