#TeamAbigail: Dramatic Exit from ECMO

For five long days, Abigail remained hooked up to the ECMO machine. On the third day, they added a dialysis machine in order to relieve the 33% weight gain due to fluid buildup that is characteristic of babies on ECMO.

While her numbers had improved steadily, ECMO carries inherent risks that are unending. In the words of a perfusionist:

Every day you are on ECMO, it’s an opportunity for things to go terribly wrong. Every time that pump cycles, that is an opportunity for something to break. It is an opportunity for a blood clot. It is an opportunity for infection. It is an opportunity for internal bleeding.

That was the reality for five days.

Every morning, I showed up at 8AM, as the docs made their rounds. The entire team taking care of Abigail–neonatologists, critical care docs, pharmacists, nurses, residents, and medical school students–would spell out their strategy for the day for Abigail. They would begin with a recap of the situation, they’d list out the vitals, they’d list all the medications–including exact dosages–she was on, they’d list all nutrition, all the most recent test results, anything of note from the nurses. Some of it was for the purpose of teaching the students and residents, some of this was due to the complexity of these ICU situations: it really did take a team effort.

The plan was to keep Abigail on ECMO for 7 days. I wanted her off sooner, as I wanted ECMO-related risks off the table. I figured that, if other complications are subsiding and her numbers are otherwise good, why keep her on ECMO any longer than necessary? I didn’t bother the docs about it, though: I figured they knew what they were doing. That’s why they are the docs and I’m a lowly IT professional rooting for my baby girl to kick ECMO’s ass.

On the fourth day, I noticed some external bleeding where the cannula line entered her neck. It seemed more than you would expect. I asked the nurse on duty about it, and she said it was no big deal. But she was a trainee. So I asked one of the docs.

The doc said that some external bleeding is normal, but this was more than usual. They gave her an extra stitch, and dressed it better. For most of day five, it didn’t seem like a problem, given that Abigail’s numbers otherwise looked good. But that external bleeding was increasing, and that just didn’t seem right.

The lead critical care doc decided that this was more than usual, but said it didn’t seem emergent. Still, she said it was worth keeping a lookout.

Then, at around 7:45, her blood pressure dropped like a paratrooper having a very bad day.

She was losing too much blood. You don’t have to be a doc to put two and two together on that one.

The doc said that they’d get a team in right away to check that out. She also decided to give Abigail some more blood. She told me to go for a run. “It’s not emergent.” Looking back, I’m thinking she just wanted to get me out of there. She liked both MrsLarijani and me, but she probably didn’t want both of us around at the same time for what was coming down. And she knew I had my gym bag with me.

So I went to the stairwell and started running stairs. I wore my phone just in case anything changed.

About 20 minutes into my run, my phone started going off.

It was MrsLarijani.

“You need to get back here now. They’re shutting down the PICU. They’re taking her off ECMO. They’ll tell you why when you get here.”

As I ran back to the PICU, I was optimistic and nervous at the same time. On one hand, she’s coming off ECMO. I WANTED that. But if they’d planned on keeping her on ECMO for 2 more days and now they’re abruptly pulling her off, then the defecation has crashed into circulation at a high velocity.

When I got there, the doc was waiting, with two computer monitors showing two different X-rays.

The one on the left showed the cannula line position when Abigail was initially put on ECMO. The one on the right showed a cannula line that had clearly shifted. That was the cause of the bleeding.

And they couldn’t simply re-insert the cannula without risking infection. So the decision was made to pull the ejection handle on ECMO.

—–

And so we were shuttled out of the room in PICU–the surgery was happening right there–and into the consult room. I locked the room so I could change out of my sweaty clothes, and a doc came in, twice, while I was in the middle of changing in order to brief us. (It was comic relief: every time she knocked, I had to quickly throw my sweats on. It provided a couple of light moments on what was a very stressful time.)

MrsLarijani was extremely worried. So was I. Yeah, I wanted Abigail off ECMO, and–for better or worse–I was getting what I wanted. The issue was whether she was ready to come off ECMO. Personally, I was cautiously optimistic. My pucker factor was a 5.

MrsLarijani, however, had been through the ringer. From the news of the birth the previous Saturday, to nearly a week on last-ditch life support, and now emergency surgery, she was worried that we were being punished for something.

I must admit, her concerns had rational basis. I mean goodness…NOTHING had been normal about this. At every turn, our attempt to have children, first by conception, then by adoption, had run into major roadblocks. And now, after being picked, we had to hurry up and wait for a month, and now we are facing the possibility that Abigail might not come home with us.

While I said we would pray about that angle, I also brought up the dynamic of deliverance that God provided the Israelites. At so many times, even when they had re-assurance, things sometimes got worse: Pharoah cracked down harder, they had an army chasing them, they spent long times in the wilderness wondering where their next meal would come from. At every turn, God effectively said, “Hold my beer and watch this.”

But yes, we prayed for deliverance for Abigail. We prayed as hard as we ever have as a couple.

Because the situation had become emergent, the NICU folks put us in a room that had a bunk bed. This saved us from having to go back to the Ronald McDonald House.

Once we got into the room, I crashed out and managed to get some good, quality sleep.

At about 1AM, we had a knock on our door. The surgeon said, “Abigail is now off ECMO, and she is doing excellent.” In my daze, I gave him a thumbs-up and said thank you.

Abigail was off ECMO.

She’d just spent her first week on this earth establishing her badass bona fides.

That’s my girl!

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