Arianna's Open-heart Surgery & After

PLEASE CLICK ON UPDATES FOR LATEST POSTS ABOUT HER JOURNEY. She had another surgery on 9/14 and on 11/2. She is having ongoing struggles since her open-heart surgery.

Arianna's high risk open-heart surgery is on August 21 and I will be out of work for no less than 4 weeks, even if things go well. My husband will also be out of work to help take care of her. I explain her condition below. For those who don't know her, Arianna is the best girl in the world. I don't know how, as a mother, to emotionally handle what she will suffer, but I'm doing my best. Financially, anything helps. From missing minimum of 4 weeks of work, living at a hospital, to keeping Arianna comfortable, life is extremely challenging right now.

Thank you to Make A Wish foundation for sending us to Orlando. It doesn't change what's to come, but it definitely helped to distract us and show Arianna a good time.

Arianna has a congenital heart defect called Coarctation of the Aorta.  She had a stent put in when she was 5 years old.  When they put the stent in, her aorta was nearly closed.  She could have died and we would have never known anything was wrong.  She has chronic hypertension, left ventricular hypertrophy, and a thickened bicuspid aortic valve, among other things including approximately a 50% reduction of blood flow in her legs compared to her arms.  We went in 1.5 years ago to have her stent expanded because her blood pressure was becoming uncontrollable, and we discovered that her stent was placed in the "worst possible location" and therefore the likelihood of fixing it through her leg artery was slim.  The surgeons decided to put her on stronger meds and wait, hoping that it would become an option after she got a little bigger.  Surgery, either way, was deemed to be dangerous and therefore needed to wait.  Meanwhile, her leg and chest pain has increased, and Arianna's blood pressure has become more of a problem, even being on additional medications.  We went in during the month of June to take another look through her leg artery to see if they could deal with the problem in a less dangerous way, however the news was not good.  It was realized that she would need open heart surgery this summer, and that it would be a surgery that is very complicated and not common.  Unfortunately, her current stent has grown imbedded into her aorta, and her aortic arch is also diseased and needs expanding.  After putting their heads together with surgeons across the country, they have narrowed it down to a few options.  One is high risk at first, but if successful, her prognosis for the future is so much better.  The other option is safer now, but almost destined to cause major complications in the future, complications that her surgeon said would cause most surgeons in the country to turn her away, because it would be too dangerous to fix.  We have no choice but to go with option 1.  The plan is for them to go into her side, clamp off the blood flow to her aorta, slice her aorta vertically and put in a graft to connect the sides and allow it to open up more. The two biggest risks are paralysis (10-30% chance) and vocal cord damage, as well as any other risks that open heart surgeries carry. They have to unclamp her aorta within 30 minutes, because after 30 minutes of the blood flow being cut off, her spinal cord will be at risk for damage.  We are horrified, but Arianna is our life, and we will get through this together.  She will be in the hospital for a week or longer, and homebound for approximately 4 weeks.  

This started out as being for her baby dolls, but now I know that I will be missing work without full pay to be with her, and we will have to get Trevor and/or other family a hotel room near the hospital. She will be in the hospital in New Orleans for no less than a week, and out of school for no less than a month for her recovery. That's granted everything goes well. Anything really does help. Even $5 helps.

Thanks to everyone who contributes to this special gift to her as well as helps us to make ends meet while We're  out with her. Arianna has been watching her campaign and reading the comments.  They make her feel very special and she's so appreciative.  Arianna definitely deserves to live a life where she doesn't have to worry about these heart problems, and her new life-like baby dolls, "Ella Rose," "Jeremy Sebastian," and "Lauren Sophie" have been keeping her completely occupied.

Those of you who know Arianna know that she is an amazing child, and that we adore her.  We hate that she has to go through this, but she really is a trooper.  afterwards, granted there are no complications.

Thank you