Surgery day. By this point we had gotten pretty used to having Laura wheeled into the OR. It certainly helped that she was being taken by Dominic again. He had been her anesthesiologist for every surgery and procedure since her arrest. It becomes a little bit easier to say goodbye when you know and trust the people who are taking care of your child.
This was, however, the first surgery that we were tackling alone – my parents had returned home a couple of weeks before when Laura was doing a bit better. We brought our ipads, books, phones… anything to keep our minds off of the surgery. This surgery was a big one – it was our last chance at saving Laura’s heart.
We knew the odds and that made the waiting that much harder. Never before had I wondered whether or not we would be able to see Laura being wheeled through that corridor to the PCICU – but this time, we knew it was a possibility. You know the old question about whether the cup is half full or half empty? Well, when given the odds of a 25% mortality rate, it’s hard to think about the fact that she had a 75% chance of making it out. I guess that makes me a surgical odds pessimist if there is such a thing.
After a few hours of waiting we finally saw the surgeon walk into the waiting room. He asked to see us somewhere else as there was another family sitting right beside us.
Breath. Just breath.
When we got to a more private part of the area, the surgeon smiled. Hallelujah. Nobody smiles when a baby has not made it through a surgery – and honestly, we would have likely seen him show up with the social worker if that was the case.
“She’s coming off bypass now.”
Does the rest matter? Oh right, yes – it probably does – time to force myself to listen to the details. This surgeon, only 3 years out from his fellowship ( just a baby!) had accomplished the impossible. He split the coronary arteries and re positioned them where they ought to have been all along. He explained that once he had gotten in there, it was evident what had happened – Laura’s pulmonary artery was lying directly over top of her coronary arteries, forcing them to narrow under the pressure. This had happened because as one entity, the button was placed in the center of the aorta rather than one on each side. Now that they were split he was able to reattach them to the sides and out of the way of the pulmonary artery.
It had been a difficult and intricate surgery but he was pleased with how she was doing. She would be coming back from surgery on an LVAD centrimag. This is a temporary Left Ventricular Assist Device that is used for those requiring temporary support. It is similar to ECMO in that it has cannulas that lead to the left ventricle of the heart and take over it’s function but the large differences are that, firstly, it does not add oxygen into the blood stream (so her lungs actually have a job to do) and, secondly, the right side of her heart would still be required to function normally.
The surgeon expected that Laura’s heart would need this support for up to two weeks as it was very tired and needed some time to recuperate.
At this point we were hopeful that she was out of the woods but transplant was still very much an option. Only time would tell if her heart would be able to recover enough to provide her body with the blood that it needed.
Other than the prayer that we knew we had been receiving from all over the country and beyond, there was one more thing that helped us through this excruciating day. In the morning on October 18th, 2016, just before being taken to the OR for this surgery, Laura smiled at us for the first time. She was just barely over a month old but she wanted us to know that she was going to be okay. It’s hard to describe how much that photo meant to us – I must have stared it down a hundred times that day.
The next day went very well. Laura stabilized on the LVAD and everything was going according to plan – we were even able to back off on a few of her heart meds. That evening, A.J and I headed home to cook ourselves some real food for supper. While at home my phone rang.
Breath. It’s going to be okay – she’s come through a lot.
Laura had not arrested, she was not dying – she was just experiencing an allergic reaction. This phone call would have been scary to anyone else, but I couldn’t help but think they should have a separate line for minor emergencies. Okay, this we can handle. I’m not convinced it was worth a phone call that nearly gave me a heart attack. They weren’t sure what had caused the reaction, but to be safe they stopped everything that they had started before the reaction -a blood transfusion and the TPN (IV nutrition) that they had been giving to her.
The next day it was time to figure out what her reaction was to so we started a blood transfusion and nothing happened. Later on in the morning, we started her TPN again ensuring that nothing else was started at the same time. Within 5 minutes, this is what Laura looked like:
Full blown anaphylaxis. This is one of those rare times that being intubated and on an epinepherine drip really comes in handy. She was given a dose of benadryl and an extra dose of epinepherine and within a couple of hours she was back to normal. This would have been a lot scarier if she hadn’t already been hooked up to everything necessary. We later discovered that the problem lay in the trace elements that are added to TPN and we were able to restart her on TPN minus the vitamins and trace elements. To this day, we are not entirely sure what she is allergic to.
The weekend was rather uneventful (which was a welcome change). Laura began to open her eyes, smile and was turning back into her normal self -or as normal as you can be when hooked up to an external heart…She had a few clots in her LVAD circuit that had to be cut out but she did swimmingly through those minor procedures (the only rough spot is the 30 seconds to 1 minute the child goes without support while the cannula is being cut).
On Monday, October 24th, 2016 we began weaning Laura’s LVAD! This was far ahead of the estimated schedule because she had been doing so well. This is when we realized that we could leave the transplant talks in the past and they stopped coming around to see her.
For the next few days the LVAD was weaned and on Thursday, October 27th, 2016 the surgeon (he was now back from holidays) removed the LVAD and Laura’s heart began working on it’s own again. He also closed her chest at this time. An echo showed that her ejection fraction was now above 30! A vast improvement on the 20 that it was before the surgery.
The next day, once Laura had passed the 24 hour mark with no LVAD, I was able to hold her for the first time in 2 weeks! In her entire life, she had been able to be held for less than 10 days so every time was a gift.
Once again, we began looking towards extubation and the road to recovery…
Current tally: Open Heart Surgeries: 4, other surgeries:1, other surgical procedures: 12, cardiac arrests: 1, minutes of cpr: 90, smiles: lots!
Our Transplanted Life 