Life in the ICU is a tangled mess of tubes and wires and beeps where time is measured by the number of minutes left on an infusion and the periodic rounding of medical teams. One day melds into the next without much activity nor rest.
In case you can't tell, Annika had a LOT of IV lines.
I seriously don't know how ICU nurses keep it all straight.. Annika had holes and tubes and wires everywhere (sternal incision, ICD incision, chest tube, two pacing wires, internal jugular central line, three or four peripheral IVs, an arterial line, a foley catheter, plus intubation.) Even so, the nurses struggled to find ways to give her all the medications, especially since some of the medications are incompatible and can't be run in the same line or at the same time as other medications.
These nurses are my heroes. During her most complex days in the ICU, Annika had many of the same nurses that she had two years ago. These most experienced nurses travel long distances year after year so that they can help these cardiac kids in their most critical moments. They remembered Annika and remembered her story. And we remembered them! All nurses are important, but I feel the strongest connection with these ICU nurses who are fully present during the most impactful moments. I feel a similar connection with the teams of ICU doctors who are there for crazy long shifts, helping day after day, night after night.
Speaking of nights, the first evening following Annika's transplant, our social worker Krystle arranged for us to sleep in one of the Ronald McDonald rooms right at the hospital. We'd been offered one of these rooms once before--the night following Annika's initial cardiac arrest. We definitely appreciated the chance to rest so close by.
Annika was extubated the following day. She had to keep the high flow nasal cannula to administer nitric oxide for her heart. She was having some difficulty breathing, so she preferred to rest sitting almost straight up.
The most special moment of the day was when music therapy came to sing for Annika. While Annie didn't feel up to participating, her entire body relaxed as the music swept over her.
Look at her poor face, so puffy from all the retained fluids. The ID band on her ankle was normally loose but became taut as her body continued to swell.
The following night was awful as Annika grew increasingly sick, uncomfortable, and restless. Her breathing was labored and she had horrible back pain. At first I thought the back pain might be due to constipation, but looking back I suspect there was a large quantity of blood pooling in her abdominal cavity.
When the morning nurse Shelby stripped Annika's chest tube at 9:30 am, the tube filled with blood. Then the blood just kept coming. Within 15 minutes, she'd lost more than 1000 mL. A rapid CBC showed that her hematocrit had dropped from 24 to 16 within a few hours. While I blogged about it in detail
here, the end result is that they called the cardiothoracic surgeon and a massive transfusion protocol. They placed another IV in her foot and started pushing blood as fast as they could. Annika was intubated at the bedside and surgery was performed right there in her room. Providers swarmed the room, each gearing up in hair nets and suits as Jason and I watched from the wide open doors, just as we'd watched Annika be placed on ECMO two years before. While the scene could have come straight from the movies, I'd be grateful if future years include less drama.
December 17th--so much deja vu. We were Day 1 post cardiothoracic surgery--again.
There are few challenges in life that can't be improved with an outrageously soft sloth blanket.
We never fully understood what that surgery fixed, but somehow that terrifying event became a pivotal junction, following which Annika started to get better. Her kidneys started functioning, her breathing eased, her electrolytes stabilized--she started to heal. Talking to Jason about it today, he reminded me about the priesthood blessing that he and our Stake President gave Annika the night before. Yes, God surely helped as well.
That evening Jason saw a coyote while out for a run and thought of Annika, knowing the photo would delight her. I showed it to her today, and he was right: she squealed for joy.
That evening the Ronald McDonald room called to let us know that they had another sleep room reserved for us. You know you've had a REALLY traumatic day when the social worker calls in a referral without even asking. We felt grateful for the gesture as we collapsed in bed exhausted. I looked at the photo of the Subway and wondered if will be able to hike this again with our Annie.
On the road to recovery. Annika's first post-op echocardiogram was pretty emotional for me. I thought so much of her donor family and wondered how they would feel to see this strong heart beating. If nothing else, the process of transplant has taught me not to assume how another must feel. I've had so many friends and neighbors offer well-intended congratulations with words like, "You must feel so happy" or "you must be so relieved!" Neither "happy" nor "relieved" capture our emotions. We feel hope and gratitude, but the brightness is balanced by an equal part sorrow.
Wednesday, December 18th. Preparing for extubation. Annika was completely exhausted, but would always rouse long enough to nod when we asked if she wanted to have her breathing tube out.
This was the first day post-surgery where she felt well-enough to open a few gifts given by our sweet neighbors.
Celebrating the 12 days of Christmas hospital-style.
Meanwhile, back at Ginny our family was blessed by the most generous 12 Days of Christmas as well. Mugs of piping hot chocolate for pipers piping--someone knows my love language.
Back to the hospital, here's Annika using an incentive spirometer to help her lungs with some atelactasis (collapsing of the tiny air sacs called alveoli), a pleural effusion (a collection of fluid around her lungs), and a small pneumothorax (trapping of air within her lungs.) Golly gee, surgery can be rough!
To add to the excitement, Annika lost a molar. Turns out that the tooth fairy pays quite well in the ICU.
Hang in there, Annika.
As Dermot Kennedy sings,
better days are coming. Soon, we'll be dancing in the sun.
