So Many Surgeries

While the holidays are usually a joyful time, this year these days were a blur of exhaustion, anxiety, and hope.  When we first arrived at the CICU, several people explained that we should anticipate a roller coaster ride of emotional ups and downs.  They also cautioned that as hard is it might be, we needed to take care of ourselves so that we can could be there for our daughter.  With that said, it's one thing to intellectually know you ought to sleep.  Forcing yourself to drift off when your mind keeps replaying your worst nightmare is another matter completely.  As a person who loves food, I never thought I could actually lose my appetite.  Now I know what it's like to feel such deep sorrow that it's literally impossible to swallow.

So please forgive me if the chronology of these next days is a bit muddled.  Without sleep or leaving the hospital, the hours blended from one hour to the next with no distinction between night and day.  There were many procedures, but I can hardly recall what happened when!  Surgical consent forms were placed before us so often that Jason and I started trading off  based on who signed the last one.  Still here's a record of her subsequent surgeries based on what I can remember:

Second Venous Return for ECMO, morning of December 24th:

When Annika arrived on Friday the 23rd, they immediately placed her on ECMO (Extracorporeal Membrane Oxygenation), as described in the last post.  This involved putting two large cannulas (tubes) in her groin, one functioning as an artery and the other as the venous return.  There was also a smaller cannula offshoot that provided perfusion to the leg with the VA (venous arterial) cannulas.  Well, it turned out that the arterial cannula was able to handle more blood flow than the venous return.  The venous return was functioning right at capacity, leaving it super vulnerable, as if riding a knife's edge.  So after a sleepless night on Friday, they inserted a second venous return on Saturday, this time going through the superior vena cava in her neck.  There had been an IJ (internal jugular central access) there, but they'd decided they could replace it with a PICC line later.  The result was a Y-shaped plumbing configuration with two venous lines out and one arterial line in.

While less terrifying than the initial ECMO operation, the insertion of the second venous return was still frightening.  Jason and I huddled outside Annika's room once more as the surgical team transformed the space into an OR.  The chaplain came to visit us while they operated and asked if we wanted help connecting with our faith community.  We told him that we already felt well connected with our bishop.

Atrial septostomy and Angiogram, evening of December 24th:

When we arrived at the hospital, the first priority was stabilizing Annika.  Once her heart rhythms normalized, the doctors simultaneously started trying to figure out why in the world this happened in the first place.  The initial echocardiogram (ultrasound for heart) looked perfect.  Four well-shaped chambers with valves that all open and close the way one might expect.  The left ventricular squeeze was substantially diminished, but otherwise everything seemed structurally fine.

So the next step was to get Annika to the Cath Lab so that they could take a look at the coronary arteries that provide blood flow to the heart via cardiac catheterization, sometimes referred to as an angiogram.  They basically insert a tiny catheter up through a vessel into your heart and release some contrast (dye) that they can then x-ray to see if there are any structural abnormalities in the coronary arteries.  Annika's coronary arteries looked perfect--the gold standard of what you might to see.  So while this didn't identify her heart problem, it did eliminate another potential cause via process of elimination.

Since Annika was already sedated in the cath lab, they decided to do another procedure at the same time--an atrial septostomy.  For this procedure they inflated a tiny balloon to create a hole between the left and right atria of her heart.  ECMO is really stressful on the body, especially as they are pumping blood backwards through the body.  Blood can pool in the left ventricle and cause it to enlarge, so creating a hole between the left and right atria helps to balance out the pressure between both sides of the heart.

Transport:  Taking Annika to the cath lab sounds like a simple enough task, but in actuality transporting a patient on ECMO is an enormous feat.  There was SO much equipment that needed to be transported with her, beginning with the ECMO machine itself.  We had two entire "trees" of IV poles with eight lines of tubing each, not to mention the ventilator and the ECMO catheters.  It took a respiratory therapist, six nurses, and a brief planning meeting to get her moved.  Physically fitting all the equipment into the elevator was dicey, but they got her there safely.  Her transport to the cath lab was in stark contrast with her transport to the OR a couple days later.  Organized off the cuff by the anesthesiologist, he just started unplugging stuff and didn't even think ahead to clear the hallway.  Annika wasn't fully sedated and began to thrash around, which is SUPER dangerous with ECMO tubing and a breathing tube.  Then he didn't even have any drugs with him, explaining how he'd take care of it once we got her to the operating room!  Thank heavens another anesthesiologist happened to be passing by with some rocuronium (a paralytic) in his pocket.  When it was all over, we just looked at each other and nearly laughed because it was so poorly handled.  You totally could have made two videos of the perfect "how-to" and the horrific "how-not-to."  I tell you, nurses know how to get things done right, and that anesthesiologist could use a lesson or two.

Cath lab miracle:  Before the procedure began, they brought us a consent form and explained that Mary Hunt Martin would be our surgeon.  Both Jason and I gasped.  Mary Hunt is a good friend and neighbor that we have known ever since we moved into the Avenues.  Not only did Eli play Avenues baseball with her son Asher, but they also rode the bus together to Emerson Elementary.  Annika loved to hang out with Asher's younger brother, Nate.  For six years, we connected with Mary Hunt most mornings as our kids hung out at the bus stop together.  We've been to Mary Hunt's and Allison's home for birthday and Halloween parties.  We've taken care of their dog Comet.  Our families are connected.  We just never imagined we would connect like this.  Apparently Mary Hunt had been talking with the hospital about our case but forgot to get the patient's name.  When they told her who it was, she dropped the phone.  In her many years of practice, she's never been the surgeon for a friend or neighbor.  As shocking as this must have been for her, we felt relieved to know that Annika was in such capable and loving hands.  While Mary Hunt is only one of many who has worked to save Annika's life, our personal connection helped us feel like Annika was personally known and loved. 

Changing of ECMO Circuit, 4:45 am on December 26th 

We made it through Christmas day without any procedures.  We were, however, concerned about fibrin building up in the venous and arterial sides of the ECMO tubing.  Basically, blood can start to clot along the tubing itself.  While this isn't a huge deal on the venous side, it's concerning when evident on the arterial side.  We worry that a fibrin clot will break free and travel to the brain, causing a stroke.

Well, over the course of the day Annika started to develop a couple of clots along her arterial line.  One of the clots was precariously situated near the junction between the tubing and the cannula itself.   In the constant weighing of ECMO risks versus benefits, they decided to do a "trial" to see if Annika's heart was ready to go off the life support.  Her heart held steady for about 45 minutes, then began to "get tachy" (meaning tachycardia, or beating too fast) and her blood pressure started to drop.  Taking her off ECMO wasn't an option yet.

In the process of ramping up the ECMO flow once more, the precarious blood clot broke away.  Based on its positioning and the way the blood was flowing, they suspect it went to her leg but aren't completely sure.  We monitored her really closely, but luckily she didn't seem to develop any sort of deep vein thrombosis.  With this clot already dislodged, they then decided to change out the entire ECMO circuit, replacing the tubing and the machine itself in order to give her ECMO a fresh, fibrin-free start.  The procedure must have been pretty urgent because they got the surgeon out of bed early Monday morning.  They started transitioning her room into an OR around 4:45 am.  Come 5:00 the surgeon's alarm went off on his cell phone, but he'd already gowned up and was sterile.  So for the next forty minutes we all just listened as it dinged continuously!  I'm just grateful that it was a relatively calm alarm.

As you might imagine, ECMO involves a lot of blood.  In changing the circuitry, they prefilled the new circuit with blood products.  Thank you to everyone who donates blood.  You too are among the many who have saved Annika's life.  (She's O positive, in case you are curious.)  As they rebuilt the entire Y-shaped VVA plumbing configuration, Jason and I felt pretty anxious and hoped they would hook up all the connections correctly.  There's a lot more at stake than when you are just plumbing your bathroom.  

And then, just as they were getting everything sorted, one of the caps flew off, literally creating a waterfall of blood that sprayed the bed, a couple of nurses, and pooled dramatically on the floor before they were able to figure out where it was coming from and stop the leak.  Talk about dramatic.  It looked like a scene from a horror show.  Yet Annika pulled through.

After it was all over and we'd mopped up, Jason and I settled back into the room to watch Annika sleep.  From my chair, I could see blood splatters all over the bed that had been missed in the initial cleaning.  After a while, I asked the nurses if they would please indulge me and let me clean them.  The nurses would have happily done it for me, but the cleaning was therapeutic for me.  In the hospital setting, there was so little that Jason and I could do.  Not only did this give me something to do, but it was one small way to make things better.

Kicking the ECMO Habit and Arterial Reconstruction, Tuesday evening December 27th

By the evening of December 27th, Annika's heart was strong enough to take her off ECMO.  She'd passed her ECMO-free trial earlier that morning with flying colors.  Even more, it was getting harder and harder to manage her sedation.  We didn't want to keep her knocked out all the time, but each time Annika woke, she was getting more and more delirious due to all of the drugs in her system.  Jason, the nurses, and I were all on constant high alert so that we could hold her hands at the first sign of her waking.  While fairly redirectable, she still tried to grab at her breathing tube.  We were terrified that she would tear it out, or even worse, thrash around so much that her cannulas would come out.  Either scenario would be life-threatening.  So even though it was terrifying to take her off life support and pray that her heart would function on its own, I also knew it was time.

The surgery took a lot longer than expected.  Apparently they found a couple sizeable blood clots in her artery, but they were able to work balloon magic to pull them out.  The arterial reconstruction was definitely more intense than just pulling a couple lines out.  Annika has about twenty Frankenstein staples spanning her upper leg/groin. They are healing well, but this whole ECMO thing is not a minor procedure.

ASD and ICD insertion, this very moment January 3rd, 2023

And now, here we are again, anxiously waiting as Annika is in surgery.   It's been close to four hours, so we are pacing, having hoped that the procedure would take less time.  She is in the process of having the hole created by the Atrial Septostomy repaired as it is no longer needed and could be risky as she has an ICD inserted (Internal Cardioverter Defibrillator.)  The ICD will be a small box that rests under her clavicle.  Should her heart ever enter a life-threatening arrhythmia again, the ICD will allow her to pass out, then deliver a substantial shock to bring her back to life.

In some ways, this surgery should be less frightening than the others.  Instead of being emergency surgery, we prepped for this procedure and were able to kiss our brave Annika as she went into the operating room.  It's fairly straight forward for the surgeons, but is still pivotal for our family.  After all, it's our cherished little girl on the table.  I think the scariest part is that they will intentionally stop her heart and allow the defibrillator to restart it, just to make sure everything is working okay.  Just writing about it is enough to cause a panic attack.  Breathe, Kara, just breathe.

And pray.

Our Annika, brave as a Gryffindor lion.