A New Normal

Savannah is my spunky, vivacious, beautiful 4-year-old. With regard to her heart, we’re in a holding pattern. Following her second surgery in Boston, she’s had a long, slow multi-year recovery that is led us to this point. Savannah’s mitral valve was the primary reason for her second surgery, and a residual VSD prolonged her immediate post-operative recovery. Her mitral valve will require replacement at some point but for now, the regurgitation is tolerable. Now Savannah is at home and growing.

Our biggest medical concerns for Savannah right now are her immune system and her overall development. Starting this her immune system, we knew that she’d have immune system issues before she was born. By not having a spleen, there are certain known and well-documented vulnerabilities associated with being asplenic. This knowledge led us to the immunology department at Cinncinati Children’s Hospital Medica Center. There we were connected with Dr. Andrew Lindsley. His testing has shown more immune suppression than we expected.

These immune system issues have prompted us to take extremely strict precautions throughout this intense cold and flu season. We’ve been near total lockdown at times. I still have to go to work, but even there I am extremely cautious. We only take Savannah to medical appointments, and there she remains inside a plastic bubble to keep her as isolated as possible.

With regard to her development delays, Savannah has significant global delays. Most notable are her speech and feeding issues. Savannah has weekly Speech therapy through our local school system as well as an OT through school. Additionally, we take Savannah to Feeding Friends in Indianapolis to get help with her severe feeding issues. In coming weeks, our hope is to share more about Savannah’s journey in order to help other families who are navigating life with congenital heart disease and other pediatric abnormalities.

Back to Boston

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 r2015-09-20 21.13.24emained 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.

2015-09-26 11.30.05On 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.

Our Journey Home

Monday, May 18th was Savannah’s complex bivent in Boston. Savannah was discharged from Boston Children’s Hospital on Wednesday, June 3rd. There was then one final slew of outpatient appointments on Friday, June 5th, then we busted out of Boston Children’s Hospital for the last time. That timeline was far faster than we had anticipated. We were planning on about 8 weeks in Boston, but she was out of there in less than 3!

2015-06-05 11.30.26 HDR

Little did we know that the fun wasn’t nearly over. Our flight out of Boston was fairly late, like 8:30 PM. Thankfully, it was a direct Delta Airlines flight straight from Logan to Indianapolis. The boarding process wasn’t all that bad, except for the less than helpful gal at the gate. She kept commenting about all the stuff we were taking with us into the cabin and not checking. Mostly it was Savannah’s diaper bag, medical equipment, etc. Turns out, it was a good thing we kept it with it and didn’t check it.

About 15 minutes into the flight, Savannah started to get cranky. She started crying. It quickly reached inconsolable levels. She then proceeded to vomit. I think she ended up vomiting like 3 times during the flight.

Lori was very concerned, so I tried to maintain some degree of calm and called for the flight attendant. They thankfully carried spare oxygen on the flight, and that was what Savannah needed. She oxygen saturation levels dropped significantly once we reached altitude. It was certainly one heck of a way to learn of her new found altitude sensitivity. We believed that was really all it was.

Our flight was one of those once in a lifetime experiences though, at least we hope it will be. We officially became a medical incident for Delta, and they made that worrisome announcement asking if there were any doctors or nurses on board. Thankfully, there was an ICU nurse sitting right behind us. We were able to talk through some of the medical worries we had, plus Delta had ground contact with their medical team for reference and updates.

We had a priority landing in Indianapolis with paramedics meeting us at the gate. The boarded the plane and escorted Lori and Savannah out into the terminal, while I stayed back to gather all our stuff. Eventually, everyone was in agreement that she was stable since she was back on the ground. We ended up getting home early Saturday morning, but our time at home was short lived.

By Sunday morning, Savannah was showing signs that she was having trouble breathing. We called Cincinnati Children’s and explained the situation, and we made the collective decision to take Savannah to the Emergency Room at Cincinnati Children’s. While this is a nearly 3 hour drive, everyone involved wanted to have Savannah evaluated and checked out. We quickly backed our bags in case of an admission, loaded up the truck, and headed for Cincinnati.

As we walked in, we were just another family in the Emergency Room. That was until we explained the situation. At that point, they led us to one of 3 trauma bays. We quickly went from just another family in the ER to being on one of those TV shows about an ER. Doctors and nurses were everywhere. Lori stayed with Savannah, while I stepped out of the way and held up the wall while talking with one of the chaplains. They apparently get paged to every trauma.2015-06-09 20.14.45 HDR

After about 20 or 30 minutes, x-rays were taken, the vascular access team had an IV in her, and we were set for admission. So we went from leaving Boston on Friday, and by Sunday she was readmitted to Cincinnati Children’s.

We ended up staying inpatient in Cincinnati through Saturday, June 13th. There were several reasons. First, she had too much fluid on her lungs. This was making it hard for her to breathe. This also meant that she had to stay on oxygen most of the time. Then secondly, her bowels were backed up due to a blockage that had formed after her initial open heart surgery. Having too much poop still in there was also making it harder for her to breathe.

Eventually, we got her cleaned out and stooling regularly. We also have Savannah on a fair amount of diuretic to keep her fluid balance on the dry side. Getting her off of these medications is and will be a work in progress for a while. There are still lots of medications to manage, fairly strict feeding schedules, warning signs to watch for, and the list goes on and on. But even with all of that, at least we’re home!

Life in the CICU

Savannah is in stable condition here in the Cardiac Intensive Care Unit of Boston Children’s Hospital Medical Center. While the surgery was technically a success, there are several big hurdles that Savannah needs to overcome. Obviously much of our concern is with the heart itself. It needs to heal, but still do its job at the same time. Right now, Savannah’s heart is not beating on its own or keeping rhythm. This is called complete heart block. Right now she is on an external pacemaker using wires running through her chest that keep her heart beating and in sync. Ultimately, a pacemaker will need to be put in if her rhythm does not return on its own.

Otherwise, Savannah is now slowing waking up from sedation. This is being done very slowly, over the course of several days. She is still on a ventilator, but we hope she can get off that tomorrow, Monday, May 25. We are also waiting for her GI tract to wake up, so we’re anxiously anticipating the all important bowel movement.

Savannah is in a stable place, but definitely not a good place. She still has a long road ahead to fully recover. We thank you all for your thoughts and prayers.

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