The Heart and Soul Family: Heart Cath

Wednesday, November 9, 2011

Heart Cath - October 31st, 2011

Arianna on her way to her first heart cath.

Thanks to Child Life Specialist she had an iPad to play with when she got there. Helped with her anxiety a bit.

Child Life Specialist helping Arianna decide what smell she wants in her anesthesia...She choose watermelon!

Arianna's cath got bumped back so the Child Life Specialist was helping us pass the time.

Then that dreaded time approached and I was able to take her back to the cath lab. She was terrified! Clung to me and cried to not be made to do it. She buried her face in my chest and I had to pry her face away and pin her to my chest to do anesthesia. WORST experience with putting her under. When her body went limp...I left her in the hands of the anesthesiology team and cried...

We waited an hour and then Dr. Sampson came out and said she did great! No left pulmonary branch stenosis so nothing was done. We would be seeing her after she was extubated and go to recovery. On the way, Dr. Sampson looked at me and said, "I have no idea what they thought they saw on MRI but her lungs are getting the same amount of blood flow." I knew at that moment that it ha to be God!

She struggle a bit in recovery so they gave her fentanyl which helped relax her until the anesthesia wore off. Her sats were still a little all over the place but we were wheeled back to the cath lab to finish recovering. We saw her heart sister, Liz, when we were being wheeled back. She came back with us and the most incredible thing happened.

Liz started talking to Arianna telling her how she gets so much strength from Ari when she's in the hospital herself getting procedures done. Arianna just stopped, looked at her with such understanding and peace, her sats stabilized and there was a moment that I cannot truly describe, but we are so thankful for the support of such an amazing friend!

Several hours in recovery watching movies and laying flat.

Grams always knows how to life her spirits!

Finally about 30 mins before we were discharged Devin was able to come see her. She was so happy to see him!

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Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Wednesday, November 9, 2011

Heart Cath - October 31st, 2011

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