We Have A Probable Diagnosis, CPVT

Lily came out of her procedure at approximately 4:30 this afternoon. Doctors found that structurally Lily appears to have a normal healthy heart. They weren’t able to pinpoint a particular area of her heart that points to the cause of Lily’s tachycardia which further suggests what her cardiologist initially suspected that Lily most likely suffers from Catecholaminergic polymorphic ventricular tachycardia also known as CPVT. CPVT is a condition (usually genetically passed down) that results in ventricular rhythm problems that can cause fainting or sudden death. Events usually occur with exercise or during stress. CPVT is caused by abnormalities in the way the heart muscle cells handle calcium. CPVT can usually be identified through genetic testing which will be done, her sister will also likely go through similar genetic testing. In Lily’s case exerting herself while swimming and repeated jumping into the pool with CPVT is most likely the cause of her sudden cardiac arrest. Doctors are confident that they can closely monitor her heart while she is in recovery and her long-term treatment plan will include medication, monitoring and implanting a defibrillator.

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The focus now shifts on Lily’s neurological recovery. During her cardiac arrest Lily unfortunately suffered oxygen deprivation which caused hypoxia to some areas of the brain as seen on her first MRI. The area affected appears to be located in the basal ganglia area. Lily will continue to be assessed on a daily basis as her mom and dad work with a neurological team and physical, occupational and speech therapists. As she becomes more alert and responsive they will be able to provide a more detailed assessment of her precise neurologic condition according to various scales. With the focus on Lily’s neurological rehabilitation Les and Jim ask that anyone with experience or referrals to individuals with brain injury instances or recommendations for her neurological recovery please leave them on the guest book page . (<– from Lily’s caringbridge.org page) please leave comment below if you have any referrals. Lily’s entire family as well as her circle of friends will have a key role in her successful recovery.

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This will be a long recovery for Lily and we ask for your prayers for baby steps each and every day. Jim and Leslie are so thankful for all the gifts and well wishes sent to CHOC. Lily is surrounded by animals, quilts, blankets and most of all your love. Your words of encouragement and support have carried them through a very difficult and emotional week.

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