Day 2 ♥ Update 2

Here’s a more in-depth update covering the last 24-hours or so.

Last night, Dr. Julia, one of the fellows in the unit, brought a 3D model of the heart and gave us an anatomy lesson.

She reviewed the major structures and functions of each part of the heart, pulling the pieces of the model apart to show us this amazing organ. While the model is much larger than an infant’s heart (or even an adult heart), and Becky’s tricuspid and mitral valves are closer together, it gave us a better visual of the problematic areas of her heart. Julia patiently answered all of my questions and didn’t give us a pop quiz. It’s another example of the great partnership in this unit between parents and the PCICU team.

Tricuspid valve. One of these 3 leaflets had torn and was repaired during surgery
The residual VSD was located in the back and more easily seen once the tricuspid leaflet was moved
Aortic valve and mitral valve

The team’s attempt to extubate Becky last night was unsuccessful. They first tried to take the ventilator to CPAP settings. But Becky wasn’t breathing deeply enough so they turned it back on. Overnight, Becky was given medication to lower her blood pressure. Once she is extubated, her blood pressure will rise. The team closely monitors these pressures. If they rise too much or Becky is too agitated, she can pull the sutures holding the patch over the VSD. As she was sleeping peacefully and not exhibiting too many signs of pain, Greta and I felt comfortable returning to the Ronald McDonald House.

I was dreaming about the team taking Becky back to the OR when I woke up early this morning. I’ve started dreaming with people wearing masks which must be one of the results of Covid. Or being in an ICU again. When I arrived at the hospital Becky soon began struggling. She was sucking on her ventilator tube and kicking her legs. She clearly wanted the tube removed. It’s hard to watch her cry out without making a sound. The resource nurse put some more morphine on board and Becky quickly calmed down. Kristin and I then had a fabulous conversation about makeup, Mexico, and chicken. It’s nice to talk about something other than ventilator settings, IV drips, and wound care. But it amazes me how quickly I’ve learn to move between subject areas.

Later in the morning, the team successfully extubated Becky. I chose to wait down the hall, enjoying the view out the windows and the warmth of the morning sun. When I returned to the room, Becky was sitting upright for the first time. She was maintaining all of her stats and breathing effectively with the help of high-flow oxygen.

Unfortunately, Becky’s morning x-ray was not as clear as the one from last night. The respiratory therapist began CPT (chest physiotherapy) as well as sodium chloride treatments. Hopefully, this will break up the secretions gathering in her lungs. Becky likes the CPT, which consists of light pounding on the chest. She doesn’t like the sodium chloride and lets the therapist know about it.

Becky has had several periods of alertness today. While I took Angela to the train for her return to Notre Dame, Greta stayed with Becky and tried to complete some school work. Becky spent the time investigating the equipment in her crib. She likes pulling on her wires and tubes. The nurse re-swaddles her and sometimes wraps her hands up. Becky takes the challenge, wiggling and squirming out of any contraption. The nurses come back in and tries again. This pattern repeats over and over again.

As I finish this post, Lauren, a nurse from another room, has stopped by to play with Becky. They are singing “The Wheels On The Bus” together. The nurse is making duck noises and giggling. Becky is trying to smile. Lauren looked up at one point and said to me, “Everyone needs a daily dose of Becky.”

She’s the best kind of medicine.

7 thoughts on “Day 2 ♥ Update 2

  1. Agreeing with Terri. Amazing. Such a child as this. Truly a gift from God to
    All of us. So much to learn from Becky. Your daughter could take these posts
    and pictures to her classmates and genetics teacher. Nothing else needed.


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