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!)

Number Available: 30

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

Number Available: 10

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

Number Available: 20

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

Number Available: 20

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

Number Available: 20

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

Number Available: 8

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

Number Available: 7

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