Ever since Savannah’s bivent surgery in May, she just hasn’t been herself. We knew that there were continued issues within her heart, in particular with her AV valves. This led us to Cincinnati several times for chest x-rays to check fluid in her lungs and echocardiograms to check her valve regurgitation and heart function. Due to the findings of those exams, we knew that another surgery was on the horizon.
On Thursday, September 17th we had a conference call with Dr. Kevin Friedman of Boston Children’s Hospital to discuss surgical options and develop a plan. The outcome of that call was that surgery would be scheduled in Boston at the earliest available date on the “out patient” surgical schedule, which we later learned would be December 2015.
By Sunday, September 20th, we knew that December would not be an option. That morning, Savannah woke up pretty puffy in the face, indicating that she was fluid overloaded. We gave Savannah her regular doses of diuretics and went on with the day. But by the time she woke up from her early afternoon nap, we knew that something was wrong. Savannah was once again puffy and extremely agitated. She was inconsolable at points, leading us to check her oxygen levels with her pulse oximeter. She was satting in the 70s, so we decided to load her in the truck and take her to Cincinnati Children’s.
Within about 20 to 30 minutes, we had the truck packed and hit the road for Cincinnati. Unfortunately, Savannah was not happy about being in the car. She continued to be agitated and inconsolable. After just a few minutes of being in the car seat, she started satting in the 50s and had short episodes of her eyes rolling back in her head. It was extremely scary. So instantly we decided to divert to the nearest local hospital to where we were, which was Community Howard on the south end of Kokomo.
Once there, we got Savannah on oxygen and got the ER doctor on the phone with the cardiology fellow on call at Cincinnati Children’s Hospital. Within a short amount of time, arrangements were being made of a helicopter transport from Kokomo to Cincinnati. Thankfully, Savannah responded well to the oxygen and stabilized well in the ER in Kokomo. Sadly, it remained obvious that Savannah needed to get fluid off to stave off going further into heart failure.
Within just a little while, the helicopter arrived to take Savannah to Cincinnati. Lori and I had to drive to Cincinnati, so we left the hospital as soon as the transport team wheeled Savannah out of the ER. We left Kokomo before the helicopter even took off from Howard. Then once we got to Cincinnati, we started our week long stay in Cincinnati’s cardiac ICU.
That week of September 21st was filled with many long nights and crazy emotions. We started coordinating with Boston Children’s Hospital to get her the surgery she needed. In the mean time, we worked to get the excess fluid off to help relieve some of the work her heart was having to do. In the process of diuresing her, her hemoglobin levels took a nosedive so she needed a blood transfusion. We also had to coordinate the medical flight from Cincinnati to Boston. That was a battle with insurance, but we finally got it approved.
On Saturday, September 26th, Savannah and Lori took a dedicated medical flight from Cincinnati to Boston. Then we prepared for surgery on Monday, September 28th. Earlier on Monday, they took Savannah to the cath lab to do a complete hemodynamic study and to visualize and measure her residual ventricular septal defects. In the cath lab, they went ahead and intubated her for the cath and in preparation of her surgery. After the cath lab, she returned to the ICU where she got one last echo to check those valves one last time before going to the operating room.
Due to the accelerated schedule of her surgery, Savannah was Dr. del Nido’s second case in the OR that Monday. It was just after 3 PM when they took her to the operating room. First incision was at 4:23 PM, and she went on bypass at 6:48 PM. The bypass time was between 2 to 3 hours, so it wasn’t nearly as long as her bivent. When she came back to the CICU around 11 PM, her chest was closed. That shortens her recovery time by several days, thankfully.
Savannah spent a full week in the Cardiac ICU in Boston. She was only on the ventilator until Thursday, October 1st, which was also significantly shorter than the 9 days on the ventilator after her bivent. Savannah was moved to the step-down unit on Monday, October 5th. This is where we remain. We’re not entirely sure when she will be discharged or even when or how we’re all going to get home. There’s a lot still very much up in the air.