TW: Coding, Medical Complexity, Heart Complications
It wasn't my daughter's medical complications that almost killed her in September 2017...it was human error.
Until now, only those closest to our family know what really happened on September 19, 2017. As I type these words, I'm shaking. I'm terrified to relive the moments of the worst day in our lives - the day we were told twice that our daughter's heart had stopped.
Savannah was still inpatient at the time (she spent the first six months of her life in the hospital); she was 4 months old and was rolled down to the operating room for the Norwood procedure. While she had undergone heart surgery before, this was the first of the major open-heart ones she would have.
We passed the time she spent in surgery with our parents in the waiting room. I was just learning to crochet and was working on a blanket for Savannah; it was something to keep my hands and mind busy. Throughout the day, Josh and I received updates of her progress through surgery. After the surgery, Savannah's surgeon met with us - her procedure was a success with no complications! We were so relieved, and I remember feeling like I could finally let out the breath I'd been holding all day. We were told to expect to be able to see her in "the bay" - the part of the Pediatric Cardio Thoracic Unit (PCTU) where the most critical of pediatric heart patients are housed - within 1 to 1.5 hours. We anxiously awaited being able to see our sweet baby. If I remember right, we even sent my mom on her way to let our dog out.
What happened next is a blur.
About an hour after visiting with the surgeon, we saw two nurses enter the waiting room. It wasn't uncommon for the nurses to be the ones to "fetch" the parents when they could finally see their child post-procedure. I distinctly remember starting to set aside my crocheting and felt the sweet relief that I would now see Savannah. I think Josh and I even started to stand up once we realized they were coming for us. I didn't see any signs of worry or concern in their eyes at first. I don't remember the exact words that were said, but they told us that Savannah had coded and asked if we wanted to move to a more private space.
I do remember not crying initially. I was in shock. Josh was in shock. They escorted us to a consultation room within the PCTU and promised to give us updates as they could. We were left alone. My dad waited for my mom to get back to the hospital in the waiting room so she could easily find him (I don't remember if it was him or I that called her to let her know she needed to come back).
I couldn't tell you how much time passed. Finally, we received an update that "they got her back." At that point, I felt a kind of stinging relief. My chest hurt. However, just a few short minutes later, the same nurse came back in and said that Savannah had coded again. I think this is when it really hit me that we could lose our daughter. I remember panicking and praying. Praying so hard that God not take my daughter. Not yet.
We were finally updated that she had been revived and that she had to have her chest opened back up in the PCTU. It would be more time before we could see her again. At some point, we were joined by our parents. I can't remember if it was before the last "revival" update or not. I just remember being so thankful that we had them there.
When we finally got to see her, I remember feeling so overwhelmed. There were so many nurses, doctors, respiratory therapists, and surgeons buzzing in and around Savannah's portion of the bay. One of our favorite nurses, Kelley, was getting updates and took over (at least for a little while) while other nurses were questioned about the events of that night. I remember finding so much comfort in Kelley being there. While composed, she was visibly shaken by the night's events as well. I remember having an "aha" moment that Savannah meant so much to the nurses that knew her best. I remember thinking to myself that their jobs must be so incredibly difficult - to see so many families affected by congenital heart disease and the heartbreak that the complications cause.
My dad recalls talking with our surgeon that night. He tells us that she said that the cardiac arrests "should have never happened" and that she was thankful she was nearby when Savannah coded.
At some point that night, I saw Savannah's ventilator being switched out for another one. I didn't think anything of it at first. However, later that night, one of the doctors on the unit stopped by and told us that he believed the initial cardiac arrest was caused by ventilation issues. He said that the proper procedures were being followed to investigate what happened to Savannah and that we would be meeting with the person in charge of the investigation the next day after she could speak to all individuals involved.
The next day we anxiously awaited the meeting. We met with the individual in charge of the investigation (I can't remember her formal title now), and she listed off the findings of the investigation.
Upon arrival to the PCTU post-procedure, Savannah's lines and ventilator tubing had been tangled in the process (as is typical for being moved from the operation able to the bed for transportation to the PCTU). When the nurses were untangling the lines, one of them silenced the ventilator from alarming to briefly unhook her from the ventilator to pass a group of wires from one side of the tubing to the other. They hooked her back up to the ventilator and then moved on to "zeroing the lines." During this process, the monitor does not show the vitals of the patient; as soon as the process is finished, the patient's vitals pop back up on the screen. Because of that, the monitor is silenced during the process. Somehow, while zeroing the lines, Savannah became disconnected from the ventilator (she was still sedated at this point). Because the ventilator was still silenced from moving the wires and the monitor was silenced and not showing the her vitals, the nurses did not realize that the tubing has disconnected. By the time they were done zeroing the lines and Savannah's vitals popped back up on the screen, she was already coding (heart stopped). We were told that they believe Savannah was unhooked from the ventilator for about 2 minutes.
Compressions were given. After Savannah was revived, her oxygen saturations steadily dropped until she coded again ten minutes later. This coding was caused by her cardiac shunt (the one just placed hours earlier in the procedure) clotting over. They believe the compressions given from the first coding caused this. I can't remember which was which, but one of the codings lasted for 4 minutes and the other for 9 minutes.
We were also told in this meeting that Savannah was given 10X the correct dosage of epinephrine during the codings for a total of 30 minutes before the error was realized.
The days and weeks that followed involved a lot of anger towards the hospital - not the staff - but with the way we were expected to move on. I will pause here and clarify that none of the cardiac unit staff pressured us to move on. However, when we did reach out to the palliative care team (note - palliative does not necessarily mean end of life care), we were told by one of the members that we should "be grateful that the hospital even told you the truth. Ten years ago they would have just told you she coded."
How were we supposed to just move on from this incident?
We struggle with this and continue to even to this day. We have no choice but to continue to trust the medical system that is best suited to manage Savannah's medical complexities. However, our trust is guarded now.
Do I blame the cardiac unit for what happened?
Yes and no. There is a very clear answer for why Savannah coded, and I cannot excuse the gaps in procedure that allowed for this to happen. Following the incident, all members of the cardiac team were briefed on what happened. We were told that nurses were reminded of the importance to always keep an eye on patients, especially when monitors are silenced. My understanding is that numerous trainings were done as well.
However, I do not hold anger in my heart towards the specific nurses that were assigned to her that night (whom I do not know the names or faces of). While I know the pain and trauma I've experienced as a direct result of that night, I cannot imagine the feeling of guilt and responsibility those nurses must feel. I know that the nurses are so very invested in the lives of the children they care for, and they only have the best intentions in the care they provide. I pray that the individuals involved in the incident remember what happened to avoid repeat instances, but I also pray that they not beat themselves up over what happened. We all as humans make mistakes, and I forgive them for theirs. It could have happened to anyone, myself included.
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