Our little Wright Family: Getting ready...

12/20/12

Getting ready...

Received all meds from pharmacy: check. PICC line pulled: check.
New baseline x-ray: check.
Ultrasound of vein they took the pick out of: happening now.

:)

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A Little History...

Carla was born, April 2, 2007, she was diagnosed with hypoplastic left heart syndrome (half a heart) 12 hours later... this began our adventures in being a heart family. Carla had the first of three palliative heart surgeries on April 5, 2007, her second on August 22, 2007, and what was supposed to be her final surgery (at least for many years) on June 10, 2009. Unfortunately, her reconstructive surgery created a new and very rare condition called Plastic Bronchitis. Plastic Bronchitis is the act of hard fibrous protein material casting the inside of the lungs. Essentially suffocating it's victim from the inside. Carla could usually cough out her casts fairly well but on March 10, 2011, after contracting RSV, she was unable to do so. She was life flighted to Primary Children's Medical Center in Salt Lake City and fought for her life for 9 weeks. It was during these 9 weeks that Carla was listed for a heart transplant, the only known "cure" for Plastic Bronchitis. In November of 2011, after discovering how much better Carla does at sea level, we transferred to Seattle Children's Hospital for transplant. On November 28, 2011, Carla was listed as a status 1a for a heart transplant. On November 14, 2012, after almost a full year of waiting in Seattle, we got "the call" that there was a perfect heart match for Carla! On November 15, 2012, Carla was given the gift of a new life! She had many rare complications after surgery, but 5 weeks later we were released from Seattle Children's Hospital! In December of 2014, during Carla's annual biopsy, the doctors discovered the beginnings of Coronary Artery Disease in Carla's new heart. This was super disappointing, because once it starts, there is no way to stop it and it is the number one cause of a need to re-transplant. In January, 2017, during a heart cath/biopsy, the doctor's found a nearly 90% blockage of one of Carla's Coronary Arteries. She was scheduled to have a stent placed on February 2, 2017. The stent worked well, and bought us more time with Carla. On February 6, 2018, during another heart Cath/biopsy, Carla went into cardiac arrest. After 12 minutes of CPR, she was stabilized, they were able to re-stent her previous stent, as it was almost 100% occluded. She was admitted to the CICU for treatment, and 10 days later we were released, but she needed a new heart. On February 21, 2018, Carla was listed for her second heart transplant. On Thursday, March 29, 2018, just 5 weeks after being listed, we got the call that there was another heart for Carla. So, on Good Friday, Carla got her third chance at life. I cannot even begin to explain the amount of gratitude and love that we feel for both of our donor families.

Treatment

The most commonly pursued treatment for Hypoplastic Left Heart Syndrome is "staged reconstruction" in which a series of operations, usually three, are performed to reconfigure the child's cardiovascular system to be as efficient as possible despite the lack of an adequate left ventricle. These surgeries do not correct the lesion, and are instead considered "palliative".

The first operation in the staged approach is known as the Norwood operation and is typically performed in the first week of life. With the Norwood operation, the right ventricle become the systemic or main ventricle pumping to the body. A "new" or "neo" aorta is made from part of the pulmonary artery and the original, tiny aorta, which is reconstructed / enlarged to provide blood flow to the body. Finally, to provide blood flow to the lungs, a small tube graft is placed either from an artery to the lung vessels (called a modified Blalock-Taussig shunt) or from the right ventricle to the lung vessels (called a Sano modification). Because of the extensive reconstruction of the aorta that must be done, this operation is one of the most challenging heart surgeries in pediatrics.

The subsequent operations in the staged reconstruction plan are the bi-directional Glenn procedure, typically done at 3 to 6 months of age, and the Fontan operation, typically done in children older than 2 or 3 years.

A Beautiful Poem

When you're going to have a baby. It's like you're planning a vacation to Italy. You're all excited. You get a whole bunch of guidebooks and you learn a few phrases in Italian so you can get around. When it comes time, you pack your bags and head for the airport--- for Italy.Only when you land, the flight attendant says, "Welcome to Holland."You look at one another in disbelief and shock and say. "Holland? What are you talking about? I signed up for Italy!"But they explain there's been a change of plans and you've landed in Holland, where you must stay. "But I don't know anything about Holland! I don't want to stay!"But you do stay. You go out and buy some new guidebooks. You learn some new phrases and you meet people you never knew existed. the important thing is that you are not in a filthy, plague infested slum, full of pestilence and famine. You are simply in a different place than you had planned. It's slower-paced than Italy, and less flashy than Italy, but after a while, after you have the chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland even has Rembrandts.But everyone else you knew is busy coming and going from Italy. They are all bragging about what a great time they had there, and for the rest of your life you will say. "Yes, that's where I was going. That's what I had planned."The pain of that will never, ever go away.you have to accept that pain because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy you will never be free to enjoy the very special, the very lovely things about Holland.

I Will Make Your Heart Whole Again

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, “Will I beokay with only half of my heart?" Jesus replies,” Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." Author unknown