QUINCY STRONG: A Journey through Ebstein's Anomaly
Organized by: Stephanie Lohr
Stephanie Lohr via Crowdrise
February 08, 2016
EVENT DATE Aug 21, 2015
Please visit Quincy's facebook page 'Quincy Strong' for detailed updates. Quincy is scheduled for open heart surgery on 2/15/16. He will have both teh Glenn & Cone Procedures done by the Children's Cardiac Surgical Team at Children's Hopsital of Pittsburgh. Quincy has been in the hospital since 2/2/16, struggling with O2 saturation levels and needing more liters of oxygen, losing weight insetad of gaining, struggling to feed, etc.. Please keep our little heart warrior in your prayers as the cardiac team at CHOP takes the first steps in trying to fix his broken heart.!
Baby Quincy Update 11/17/15: Our little heart warrior has had some ups and downs this past month. Quincy is now on home O2, which is stabilizing his oxygen saturation levels and helping the little guy sleep better. His echocardiogram last week showed that his regurgitation (shunting of the blood from the right chamber to the left chamber of the heart) is severe, with blood still leaking through his tricuspid valve and PFO hole. All of this is resulting in his oxygen saturation issues and difficultly breathing at times.
His right atrium is extremely enlarged, while his right ventricle is barely there. He has had troubles feeding as well and has stopped gaining weight (he actually lost weight last week). Since he was born, the goal was to hold off of his open heart surgeries, valve repairs and valve replacements until he was 1 -2 years old. The predictors for surgery are trouble feeding, weight loss and difficultly breathing. His cardiologist now believes with his current condition, they will need to begin surgical interventions much sooner, perhaps the beginning of the year. This is not the news we wanted, but we are confident that Children's Hospital of Pittsburgh will do what is best for Quincy when that time comes. They have a new cardiac surgeon coming on board in the January/ February time frame- his name is Dr DiSilva and he's from Brazil. He is known world wide for operating on Ebstein's babies and even invented one of the procedures Quincy will need. Quincy may be one of his first babies upon arrival.
Quincy's mom is now back to work and keeps her head high and stays positive in the midst of managing Quincy's Care, coordinating constant Doctor Apts in both Johnstown & Pittsburgh, arranging home health visits, administering meds, using oxygen and a nasal cannula on Quincy and constantly checking his oxygen levels and heart rate via a monitor contained in a sock Quincy wears on his little foot along with a heart monitor. Kaylee & Jamie appreciate the constant love, support and prayers. You can contribute to Quincy's foundation via the link below. All donations go towards Quincy's care. Thank you! XoXo
Baby Quincy Update 10/8/15: Another bump in the road today for our little heart warrior. He was again admitted to Children's Hospital after his routine appointment. His oxygen levels are low. His echo shows moderate to severe regurgitation, meaning the blood in the right chamber of his heart is shunting back to the left through his PFA hole and the leaking valve, hence some of the blood his lungs are receiving is de-oxygenated. He may need a blood transfusion. Continue to pray for this beautiful, strong, sweet, and innocent baby boy. Every week begins a new chapter of his journey. Keep your fight on Quincy!
Baby Quincy Update 9/11/15: Quincy had another busy week of prediatric and cardiology appointments! Overall, good news across the board. They are holding off on his echocardiogram at Children's until Oct 8th. Over the next 4 weeks as the pressure in his lungs continues to drop, the regurgitation in his heart due to the valve issues will improve, stay the same or worsen. That outcome will determine his next step in treatment. His little body has been so much stronger than expected, so we are praying his lungs and heart continue to stand strong in the coming 4 weeks. He is finally gaining a little weight, though only in the 26th percentile, but the pediatrician and cardiologist are happy with where he's at. His home health appointments have been extended so they can continue to check his vitals and progress. And although they lost- Quincy got to watch his first Steeler's game in his gear! Keep praying for our little heart warrior. You're love and support mean so much!
Baby Quincy Update 8/29/15: Quincy got to go home last night! He's stable and will have a home health nurse helping Kaylee & Jamie. He'll also been seen regularly at childrens for evaluation and testing. Unfortunately, the docs claim his regurgitation will get worse as he grows, his atrium will strech which will cause more leakiness in the heart and ongoing issues with the functioning of the valve. They also believe he may need a few different procedures before the actual open heart surgery and valve replacements. His right ventricle is small and his heart remains enlarged! But they were comfortable with how stable his vitals have been and how well his heart is working right now. We are optimistic our heart warrior will continue to beat the odds!
Baby Quincy Update 8/25/15: Quincy has been moved to the cardiac step down unit!! Oxygen has been removed, lines are out of his belly & he has been feeding well. But had to put an IV back in because his blood sugar is low. If they get 4 readings in a row of 60 or higher , the IV can come out. FIngers crossed!
Baby Quincy Update 8/24/15: Quincy's PDA (Patent Ductus Arteriosus) still hasn't closed. The aorta & pulmonary artery are connected by a blood vessel called the ductus arteriosus. Within minutes of birth, this vessel is supposed to close as part of the normal changes occurring in the baby's circulation. Quincy's PDA still has not closed and remains open, putting strain on the heart and increasing BP in the lung arteries and causing left to right shunting. He will have another ech...ocardiogram tomorrow to check the PDA. His last echocardiogram showed severe displacement of the tricuspid valve, severe valve regurgitation and heart enlargement, but no pulmonary valve obstruction. He's now also on lasiks (diuretics) & heprin (blood thinners), along with antibiotics to prevention infection in the heart valve.
The best news today is that Kaylee got to hold Quincy for the first time since he was born and she also got to introduce his first bottle and feed him! The staff in the NICU at Children's Hospital of Pittsburgh have been wonderful. Again, please keep this family in your prayers! Quincy is a warrior!!
Quincy James Ogline was born Friday, August 21st at 10:59am, 7 lbs 9 ounces.
Mommy got to hold Quincy before he was taken to the NICU. Her & daddy were later by his side for a little while before he was transferred to the CICU at Children's Hospital of Pittsburgh. Within the next few weeks it will be determined if/ when he needs heart surgey. The family is so grateful for everyone's support and prayers. Keep the prayers coming because they are working! #QuincyStrong #Ebsteinsawareness
During her 3rd trimester of pregnancy, my niece Kaylee & her husband Jamie received the heart-braking news that there was something wrong with their baby boy...Qunicy was diagnosed with Ebstein’s anomaly, a rare congenital heart disorder occurring in ≈1 per 200 000 live births and accounting for <1% of all cases of congenital heart disease. The coming weeks consisted of many trips to UPMC Magee Women's Hospital in Pittsburgh, PA and consults with pediatric cardiac specialists and surgeons, preparing for a high-risk delivery and multiple scenarios surrounding the babies condition and action that would need taken when he was born. What Is Ebstein's Anomaly? This rare defect involves an abnormality in the Tricuspid Valve, which connects the right atrium with the right ventricle. In Ebstein's Anomaly of the Tricuspid Valve, the valve forms abnormally and is lower than usual in the heart (shown in the diagram). This displacement of the tricuspid valve results in insufficiency (leakiness) of the valve, which causes the right atrium, or collecting chamber, to be larger than normal. In addition, the "leaflets" or flaps of the tricuspid valve are usually abnormal in form. This stretched enlargement of the right atrium can predispose children to abnormal heart rhythms. Also, the abnormal position of the tricuspid valve causes part of the right ventricle to become functionally part of the right atrium. This is known as atrialization of the right ventricle. Frequently associated with this defect is a hole in the muscle wall that separates the atria, or upper chambers of the heart, known as an Atrial Septal Defect (ASD). Because of the increased pressure in the right atrium as a result of the leaky tricuspid valve, blue (oxygen-depleted) blood in the right atrium will often cross to the left atrium through the ASD. This results in de-oxygenated blood in the left side of the heart and decreased oxygen levels in the body. Arrhythmias and Ebstein's Anomaly Ebstein's Anomaly involves a deformation of the tricuspid valve, with abnormal valve leaflets and a position in the heart that allows the right atrium to extend well into the space of the right ventricle (known as atrialization of the right ventricle). The right atrium and right ventricle often become enlarged (dilated) in this defect and the right ventricle may develop thickened muscular walls (hypertrophy). In addition, an atrial septal defect (ASD) is often present and may be patched during repair. The repair operation also involves some suturing of the wall of the right atrium and/or the replacement of the tricuspid valve. All of these factors encourage the development of atrial arrhythmias, such as atrial fibrillation and/or flutter, which will occur in one half of adult Ebstein's patients. Accessory conduction pathways are often found in the Ebstein's patient. These are abnormal routes for the electrical impulses that may lead to atrial arrhythmias, such as Wolff-Parkinson White syndrome. A single Ebstein's patient may experience more than one kind of arrhythmia. However, heart block (the slowing or stoppage of the movement of impulses from the sinoatrial node, the heart's natural pacemaker) is not usually caused by this defect and arrhythmias in which the heart's rhythm is slowed down (bradyarrhythmia) are uncommon. Treatment of arrhythmias in the Ebstein's patient may involve medications and/or the implantation of pacemakers or ICDs (implantable cardioverter defibrillators that detect arrhythmias and shock the heart in order to restore normal rhythm). Radiofrequency ablations (non-surgical procedures in which the heart tissue that is causing the arrhythmia is neutralized) are performed, though with somewhat less success than with the average patient (75% successful as opposed to 95%), and with more risk of recurrence. An operation known as a "right-sided maze procedure," in which a series of incisions are made in the wall of the right atrium to interrupt conduction pathways, has proven effective in treating Ebstein's patients with atrial arrhythmias.
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