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.

Surgery a Success

In short, Savannah’s surgery was a success. She has a four chamber heart! That stated, the actual outcome and duration of recovery is still very much unknown. Savannah is in critical condition in Boston Children’s Cardiac Intensive Care Unit.

The biggest concerns right now are the pressures within her heart, along with the electrical pathways that were disrupted during surgery. She is in complete heart block right now. Surprisingly, this is not an urgent concern as she still needs time to heal. The heart block will either resolve itself completely as the heart heals, restore enough conductivity that medication can help, or she will need a pacemaker. It could be several days or weeks before we start talking pacemaker though. We are hoping and praying that her heart will return to a complete sinus rhythm as it heals and a pacemaker will not be necessary.

We certainly appreciate all your thoughts and prayers during this difficult time. We will update more details as time allows.

This is Ridiculously Hard

This is so very hard. The heaviness and reality of the situation is really weighing on us tonight. Earlier this evening, Dr. del Nido himself called us to review his surgical plan. I won’t go into the details of that whole conversation, but it’s mostly good. He still feels that Savannah is a strong candidate for a bivent repair, but so much of this will come down to game time decisions in the operating room.

In preparation for the surgery, we had to give Savannah a bath. The bath involved washing with chlorhexidine, which was extremely traumatic. She screamed through almost the whole bath. Then after we got her dressed, she still screamed. At that point, all she wanted was her Daddy. I laid down on the bed and laid her sweet head on my chest, wrapping my arms around her. Within about a minute, she peacefully fell asleep.

As I held her, all I could do was cry. Cry for the pain and stress that she’s about to endure. Well in reality, she’s going to be so drugged that she won’t feel much of anything. Lori and I will be the ones experiencing most of the pain and stress I think. I’d imagine Savannah will mostly be scared and frustrated, because she won’t know where she’s at, what’s going on and why she feels this way.

On some level, there’s a feeling of responsibility for my child’s “birth defects.” It’s as if in some way it’s my fault she was born this way. After all, I did play a role in conceiving her. But all in all, no one knows why babies are born with heterotaxy. It’s not like Lori or I did something wrong! There’s just that unavoidable parental responsibility that weighs on my conscience – rationally or irrationally.

Then there’s the voice that constantly asks, “What if?” What if something bad happens? What if they can’t do the bivent? What if she has a stroke and has brain damage? What if she doesn’t make it? What if this is the last time I get to hold my precious little girl? I think these are valid fears, concerns, or questions – whatever you want to label them. Frankly, it’s okay to be scared! Being scared or afraid are sincere and real human emotions. I think it all comes down to how we deal with them.

Regardless of the outcome, I know that I did my best. I advocated for her in the best way that I knew how. I took her to the best doctors, and I traveled hundreds of miles to get her to the best hospitals. And with that assurance, I can take solace in the fact that I did everything humanly possible. The rest is up to God. He created Savannah, not me. It’s His plan, not mine.

Tomorrow’s The Day

Well, tomorrow is indeed the big day. Surgery day. These last couple of days we have been preparing for Monday. We flew in late on Wednesday, May 13th. Then we started bright and early on Thursday with pre-op day. We spent almost all morning at the hospital. Our time there consisted of lots of smaller appointments, some more traumatic than the others. Chest x-ray was not much fun. Both Lori and I were having to hold Savannah in the proper position while the radiology tech got everything situation for the x-ray. We did at least get through that one without vomit. We couldn’t say that for the physical examination with the cardiac pre-op nurse practitioner.

2015-05-14 07.20.42On Thursday, we also met with one of the cath doctors ahead of Friday’s heart cath. We also had a good meeting with Savannah’s cardiologist here in Boston, Dr. Kevin Friedman. He answered some of our questions and laid out some of his post-op expectations. Lastly, we toured the cardiac intensive care unit (CICU) and the heart floor. It was shortly after noon that we ended pre-op day. This allowed us to get caught up with my mom, who also flew in on Wednesday. We all came back to the Yawkey House for some lunch and relaxation. Just for reference, the Yawkey Family Inn is a family housing facility for Boston Children’s Hospital patient families.

Friday came with a 6:45 AM arrival time. Savannah was first case in the cath lab. Overall, the cath went very well and required no intervention. Her pressures were good, and there were no surprises with regard to her anatomy. This meant that her cath was pretty short and uneventful. While Savannah was in the cath lab, we did get to meet with Dr. del Nido’s surgical fellow. She was very helpful and informative. She built on Dr. Friedman’s explanation to give us an even better picture of what to expect.

Now when I use the word “picture,” I mean that both figuratively and actually. We discussed the finer points of the tubes and the wires, as there will be a lot of them. There’s even a 20% chance that her chest will remain open after surgery. The surgeon may choose to leave her chest open if the swelling is too great. These are the kinds of realities that you need to braces yourself for as a parent.

The biggest piece of news that came from that discussion was the fact that the plan is to do a single bivent surgery and NOT stage it into two surgeries. This is great news! Savannah is big enough that a single surgery should be all that’s needed to achieve a bivent. There’s still some unknown territory with regard to how del Nido is going to get the blood flow from her left ventricle to her aorta. Then there’s additional mystery surrounding whether or not her pulmonary valve can be salvaged or will need to be replaced.  We will have a chance to discuss these topics with Dr. del Nido on Monday morning before her surgery.

2015-05-15 12.14.25After signing the consent for surgery came six hours of post-cath observation. Once all the initial drugs wore off, Savannah began to realize where she was, how uncomfortable she was, and how much it hurt. Her nursing staff was great, but it was still a long 6 hours. Once we got to leave the hospital on Friday prevening, we began our weekend. We’ve spent the vast majority of our time in our room here at the Yawkey house. In part, we don’t want germs. More so, we don’t want pollen.

Whatever allergens are plaguing New England right now are affecting all of us, including Savannah. I’m to the point of routinely taking Benadryl Allergy capsules on top of my usual allergy meds. This stuff is crazy!

We certainly appreciate all the kind words and messages. We can certainly feel all your thoughts and prayers as we go into tomorrow’s surgery. Please keep them coming and thank you. Some of you have also asked about an address where you can send cards, packages, etc. The best way to do that is going to be to send stuff here to the Yawkey house. The address is below. We’d ask that you NOT send flowers, as we have enough pollen already, and no balloons. The hospital has restrictions on balloon, and Yawkey is a hospital-owned facility. Thanks for your understanding.

The Yawkey Family Inn
Attn: Savannah Hensler Family
241 Kent Street
Brookline, MA 02446

Savannah’s Heart Fundrasier – Jewelry

We leave for Boston in LESS THAN A WEEK!

Some of you may know that I (Lori) used to make metalwork jewelry full-time before Savannah was born.  I met some fantastic ladies through this and they are still some of my dear friends!

They want to help Savannah in Boston, so here is what they’re doing!

Several ladies have picked a special item in their shop to be a fundraiser for Savannah.  When you purchase these items, a percentage of the sales will be donated to Savannah’s heart fund.  There are a limited number available!  Please shop from these fantastic ladies and help Savannah at the same time!

Fleur Designs Jewelry: Custom Key Chain for Dad (Great for Father’s Day!)

Fleur
Number Available: 30
https://www.etsy.com/listing/232157163/you-got-this-dad-keychain-for-dad-custom


JLynn Creations: Mother’s Necklace, Hand Stamped and personalized

Jlynn
Number Available: 10
https://www.etsy.com/listing/232178733/savannahs-heart-mom-necklace-hand


Hope of my Heart Designs: Fine silver fingerprint necklace, using your loved one’s actual fingerprint

Melody
Number Available: 20
https://www.etsy.com/listing/232181479/savannahs-heart-fingerprint-or


Stamped by Design: “I Love You More” aluminum dog tag with stainless chain

Joy
Number Available: 20
https://www.etsy.com/listing/232211547/i-love-you-more-mens-dog-tag-necklace


Lily Brooke Vintage: Hand Stamped Beach Bangle Bracelet “Toes in the Sand”

LilyBrooke
Number Available: 20
https://www.etsy.com/listing/232229934/beach-bangle-bracelet-hand-stamped-toes


Silver Lush: Expandable Silver Wire “Mom” Bangle Bracelet with Birthstones

SilverLush
Number Available: 8
https://www.etsy.com/listing/232228947/expandable-silver-wire-bangle-bracelet


Hotaru Jewelry: Couple’s set: You Have My Heart Personalized Key Chain and Necklace

Hotaru
Number Available: 7
https://www.etsy.com/listing/232432118/you-have-my-heart-personalized-key-chain

This entry was posted in Mom.

Savannah’s Heart Fundraiser at Hawg Heaven

Carol Wills and the incredible folks at Hawg Heaven have graciously agreed to do another fundraiser for Savannah. They did a huge fundraiser for us back in May 2014, and this year they are trying to make it even bigger!

With Savannah’s first open heart surgery next month, the costs are mounting! This fundraiser is a way for just about everyone to do something they do already: eat! The proceeds from the entire day are being donated to Savannah’s Heart Fund.

Despite a dreary and cool weather forecast, I’d invite you to come out and enjoy some great food! If nothing else, swing through and pick up some food to go.

If you’re not sure where Hawg Heaven is located, you can find them on Defenbaugh between Washington and Highland Park. Just go to the stop sign at Webster, and they’re right there on the corner. You can check out this Google Map if you need help.

Feel free to invite your friends and family and share the flyer. We hope to have a huge turnout, and turn on as many people as possible to the amazing food that Hawg Heaven has to offer!

This entry was posted in Dad.

Boston Bound

In recent weeks and months, we’ve been fairly quiet on social media and on our blog with regard to Savannah’s health. In part, there thankfully hasn’t been a lot to share. We’ve also been trying to just enjoy every moment of life, not thinking about Savannah’s surgery. But all things considered, Savannah is doing very well. Our mission since returning from Boston at the beginning of March has been to get her bigger for surgery. I think we’ve accomplished that mission! Savannah is now pushing 11 kilograms. That’s about 24 pounds for you normal folks.

Unfortunately, we are indeed Boston bound. Savannah will have open heart surgery at Boston Children’s Hospital on Monday, May 18th. For those of you who don’t know, my daughter, Savannah, has an extremely rare collection of birth defects known as Heterotaxy Syndrome. Simply, this is where a baby’s internal organs don’t form in the proper place. This can then lead to the organ not forming properly or just not forming at all. Within Savannah, her spleen, liver, lungs, intestines, kidneys, ears, spinal cord, trachea and heart are all impacted by her Heterotaxy.

The most grave concern right now is Savannah’s heart; thus the name of the blog and the upcoming heart surgery. Savannah’s heart is on the right side of her body, which is the “wrong” side from you normal folks. Other than making surgery a little bit harder, her heart placement isn’t a huge deal. That’s where the good Lord put it, so that’s where it will be! The problems lie more in her heart’s internal structure and the external plumbing. Right now, Savannah has a large hole in between the pumping chambers of her heart. This allows all the oxygen-rich and oxygen-deficient blood to mix inside her heart. It’s rather inefficient!

The normal human heart has two main pumping chambers called ventricles. By God’s grace, Savannah was born with both ventricles in proportional size. When we first learned of Savannah’s heart issues in utero, her left ventricle was hypoplastic or underdeveloped. The miraculous growth and development of her left ventricle meant that she is now a candidate for this surgery called a “bivent.”

“Bi” refers to two, “vent” refers to ventricles. Two ventricles. So what, right? Well in the pediatric cardiology world, this is an important distinction. I’ll explain why in a moment. First, it is important to understand the separate jobs of the two ventricles. The left ventricle pumps oxygen rich blood to the aorta, which carries the blood to the rest of the body through many arteries. The right ventricle pumps the oxygen deficient blood back to the lungs for more oxygen by way of the pulmonary artery. So while they both pump blood, the oxygen content and destination of the blood are very different.

So why do they call this surgery the “bivent?” This name is a specific distinction over those congenital heart disease patients that are single ventricle. This is where heart surgeons take the job of the right ventricle away from the heart and let the blood that’s “coming back for oxygen” flow directly to the lungs. The heart doesn’t pump it there anymore, it just flows there passively. This process is usually done over a series of three open heart surgeries. While three surgeries sounds scary and unfavorable, this type of surgical repair has been around for decades. It’s honestly an “easier” and safer option for a lot of these babies with complex congenital heart disease. Unfortunately, it can lead to many more problems later in life. This is what we’re hoping to minimize by doing the riskier, more involved “bivent” repair now.

The basic gist is: Savannah has two healthy ventricles, so let’s use them! After much deliberation with cardiologists and cardiac surgeons in both Cincinnati and Boston, we’ve made the decision to pursue the “bivent.” This surgery seeks to restore the separation between Savannah’s two ventricles. As you might imagine, it’s far more complicated than just building the wall back up between the two ventricles. Savannah has some major “plumbing” problems involving her valves and those two great arteries – aorta and pulmonary artery. Both of Savannah’s great arteries come off of her right ventricle. This is called Double Outlet Right Ventricle (DORV). Now if you’re still with me from a few paragraphs ago, you’re thinking: “Isn’t the aorta supposed to come off the left ventricle?” Why yes, yes it is! So how is that fixed? There are a couple of options, but it’s ultimately up to Savannah’s surgeon to come up with the best plan. He might completely move the aorta, put a conduit (small tubing) in to carry the blood from the left ventricle to where the aorta is now, baffle it, implement some combination of these, or heaven only knows what else he can do!

Needless to say, there are several layers to this already complicated and risky surgery! The complexity and inherent risk are ultimately the factors that pushed us toward Boston Children’s Hospital. First, BCH is ranked by U.S. News and World Report as the number one hospital in the country for pediatric cardiology. This caught our attention. Secondly, BCH sees a high volume of Heterotaxy cases, to the point that they have actually published their Heterotaxy patient statistics. I’ve yet to see any other center do this. Third, BCH has a whole program dedicated to the “bivent.” They call it the Complex Biventricular Repair Program. After all, BCH really pioneered this type of repair. Now when I refer to Boston Children’s Hospital here, I’m really referring to their Chief of Cardiac Surgery, Dr. Pedro del Nido, and his fellow cardiac surgeon, Dr. Sitaram Emani.

After we learned of Savannah’s complex heart defects, we began extensively researching treatment options. We eventually found Boston’s Bivent repair program and Dr. del Nido. At that point, Lori reached out to him to ask if he would take Savannah on as a patient. He agreed. Once Savannah was born and we really got to see what she had going on in there, even our Cincinnati cardiologist recommended Boston as Savannah’s best repair option. So, here we are. Five short weeks away from the scariest day of my life!

I’m dreading it. Completely do not want to go! Intellectually, I know this is what Savannah needs. Emotionally, I don’t want to put Savannah through this. I don’t want Lori to have to go through this either. This whole situation is just scary. The life of my little girl is sitting in the balance here! This is not okay.

But beyond the emotional turmoil this brings, there are also some practical issues that go along with this surgery. I’ll be taking unpaid leave from work to go to Boston. Lori won’t be working either obviously. We do have a place to stay in Boston, and it’s $30 per night. While this truly is a huge bargain for Boston, Massachusetts, this expense will add up quickly. Likewise, air travel just to get there and back will be extremely expensive. Add in food, other basic essentials, and lost wages, and we’re looking at thousands upon thousands of dollars in expenses over the next few months. Now this is without even considering the medical costs! You don’t want to know how big those are.

If you’d like, there are several ways that you can help. First, pray. Pray for Savannah, her medical team, and us as well. Secondly, eat. This coming Saturday, April 25th, it will be Savannah’s Day at Hawg Heaven in Kokomo. Carol Wills and her staff so graciously helped us last spring with a similar event, and they’ve once again agreed to do the same this year! Hawg Heaven makes amazingly delicious food, so please come out next Saturday to Hawg Heaven at 425 Defenbaugh St in Kokomo.

Lastly, we will certainly accept cash or check donations for Savannah’s Heart Fund. Donations can be sent to Savannah’s Heart Fund, 120 N Dixon Road #314, Kokomo, IN 46901. They can also be made at any First Farmers Bank & Trust branch. You’ll just need to mention my name, Ryan Hensler, and that the donation is for Savannah’s Heart Fund. It may just be easier to click on the YouCaring widget at the top right of this page to make a donation online. Every bit helps, and we are so very thankful for everyone who has helped Savannah through this journey!

A Gift for Savannah’s Heart

Throughout much of this year, our blog posting discipline has been lax. This is not because important events and milestones have not happened, it’s just that life tends to get in the way of writing most days.  In recent weeks, we celebrated Savannah’s big birthday. Yep, our Heterotaxy Hero turned 1. Also, an exploratory heart cath on October 16th gave us a big reason to wait on her heart surgery.  Savannah’s heart function is good, her lungs are protected, and she is slowly but surely growing.  This meant Thanksgiving at home and now Christmas too!  This is such a huge blessing, but alas Savannah’s surgery will be here soon enough.  Our new date range is late March or early April 2015.

From the outside, it’s hard to tell that there’s really anything wrong with Savannah.  Beyond being small for her age, she is quite healthy.  Frankly, it’s fairly miraculous when you consider at her Heterotaxy diagnosis. From the cardiac aspect alone, the list is quite overwhelming:

  • Bilateral Superior Vena Cavas
  • Complete Atrioventricular Canal 
  • Congenital Pulmonary Valve Stenosis
  • Dextrocardia
  • Double Outlet Right Ventricle
  • Malposed Great Arteries
  • Patent Ductus Arteriosus

As we explain Savannah’s heart conditions and share our journey towards Boston, we get many of the sames questions.  The first: Why Boston?  The answer is simple, yet multifaceted. We believe that Children’s Hospital in Boston is the best place to have Savannah’s surgery.  When we first started looking at pediatric heart programs before Savannah was born, we quickly narrowed our list based on input from various sources. We asked other heterotaxy families where they went, we reviewed guides like U.S. News and World Report, and spent hours on Google. When dealing with this kind of cardiac repair, it’s more than just selecting a hospital.  You’re selecting a surgeon.  Even before Savannah’s birth, we reached out to the Chief of Cardiac Surgery at Boston Children’s Hospital, Dr. Pedro del Nido.  Dr. del Nido agreed then to take Savannah on as a surgical patient.  Dr. del Nido has nearly 30 years experience in pediatric cardiology.  He also has an extensive record of repairing complex hearts like Savannah’s.

One of the other top questions we receive is: What are they going to do when you take Savannah to Boston for surgery? This is a question that we can vaguely answer.  The goal is to get Savannah to where her heart will have 4 separate chambers that can do the job God gave them – a biventricular heart.  Right now all the oxygen-rich and oxygen-deficient blood is mixing together within her heart.  Dr. del Nido will need to repair her complete AV canal defect to separate the oxygen-rich and oxygen-deficit pumping chambers and valves.  Then he’ll need to address her double outlet right ventricle/malposed great arteries, pulmonary valve stenosis, bilateral superior vena cavas, and probably remove her ductus arteriosus.  Can all this be done in one surgery?  We don’t know, but it would be awesome if it could.  How will all of these issues be addressed?  We don’t know.  When will you have the plan together?  Much of the plan we’re already making, the finer details will be decided in the days before her surgery, and some decisions will likely be made once Dr. del Nido gets Savannah into the operating room. This is one of the main reasons we need to have an experienced surgeon with a knowledgeable and advanced support team along side him to make this repair a success for Savannah.

Beyond the stress of having a child that needs such a complicated surgery, we have the added stress of going to Boston, Massachusetts to have that surgery.  Frankly, this is going to be a very expensive endeavour. Despite working two jobs and running my own company alongside Lori’s thirty-one bag sales, we don’t make enough money to cover all the upcoming costs ourselves.  In all honestly, we hoped to be much farther along in this fundraising journey, but there were several fundraisers that were promised that never actually happened. When we look at our budget and upcoming expenses, we are needing to raise $25,000 between now and March 15, 2015.  Yes, that is a lot of money, at least by our economics.  Thankfully, we’re leaving this to God’s economics.  God knows the need, and we’re trusting God to provide.  In fact, we don’t have any plans outlining how to raise this much money.  That’s why we’re asking for your help.  We know that so many people are ready and willing to help, they simply don’t know of the need.

If you’d like to donate, please visit our donation page.  If you’d like to help Savannah with some kind of fundraiser, please contact us by commenting below or find us on facebook.

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