Baby Xavier's Medical Fund
Donation protected
Lindsey and Bryan's Story
"On March 13, 2017 Xavier Ray Jones entered the world at 12:54 p.m., 7 lbs 7 oz, kicking and screaming. Few weeks prior, Xavier was diagnosed via ultrasound with Pulmonary Atresia Intact Ventricle Septum (PA/IVS) His pulmonary valve, which blood flows through from the heart to the lungs to be oxygenated, was extremely narrow and his right ventricle, which pumps blood from the heart to the lungs, was abnormally small. We were told he would most likely need 3 open heart surgeries: One surgery to open the pulmonary valve and two surgeries to reroute the blood so his right ventricle would not be used. On the day Xavier was born, all was well. The doctors were amazed by how well he was functioning. The nurses were in disbelief when they were told his condition because he didn't act like a typical PA/IVS baby. He was pink, he cried, he nursed, and he breathed on his own without oxygen. These were all things we were told he wouldn't do at birth until his first heart surgery.
On March 20, 2017 Xavier was taken down to get a cardiac catheter done, which is a procedure where doctors examine the function of the heart and flow of blood. This procedure would tell us if his surgeries discussed with us during pregnancy were indeed the right ones to do. During the procedure, the doctors noticed his coronary arteries that feed the heart muscle, were abnormal. This could not be seen through ultrasound during pregnancy. His heart also was not beating properly. These two things combined put Xavier at great risk for a random heart attack. Just the stress of him crying like a normal baby could cause a spontaneous heart attack. Luckily, he is a calm baby.
After the procedure, the doctors came to tell us the news and where we could go from there. We were informed that because his coronary arteries were so abnormal, we could not do the original surgeries because they would do more harm. Our only option for Xavier is a heart transplant. We decided to proceed with getting Xavier put on the transplant list. We had many tests, meetings and papers that had to be signed.
Wednesday, March 22, 2017 at 7p.m. Xavier was placed on the transplant list at 1-A status, meaning he is in the most critical need for a heart and he is a top priority. He was placed on many medications to help not overwork his heart. He has been sedated and medically paralyzed so he doesn't cause himself stress. As time passed, Xavier slowly got stronger and his body adjusted to his heart function, but it's still not something he can live with. We were able to remove some of the sedation and remove the paralyzing medicine. We even held him again on April 24! This was the first time we were able to hold him in almost a month.
A few days later Xavier developed a fever and had to be paralyzed again to help him not overheat or overwork himself. He was generally not feeling well, on top of his heart condition.
On May 2, 2017 Xavier's heart rate dropped extremely low and his blood pressures tanked. They had to start CPR and administer Epinephrine (adrenaline) to get him back. Fortunately they were able to help him. Xavier is still in a very dangerous state and we do not know what his future holds. There is nothing else we can do for Xavier at this point. It is up to him and his little body if he can hold on to get a heart.
Receiving a heart, or any organ, cannot be predicted. We have no idea how long the wait will be. We have been at Lurie Children's Hospital in Chicago for 7 weeks and Xavier has been on the transplant list for 6. Once he receives a heart we are looking at another 2 months in the hospital after transplant."
Lindsey and Brian have two other children at home; Rylan (5) and Lily (3), who want nothing more than to see their little brother come home. As if Xavier's situation and being away from Rylan and Lily aren't stressful enough, the medical bills continue to add up. All of the proceeds will be used towards baby Xavier's medical bills. A donation of any kind will be greatly appreciated. If you are unable to make a donation, which is completely understandable, sending prayers and positive thoughts are appreciated just as much.
Thank you for taking the time to read Xavier's story, and thank you all in advance for prayers, positive thoughts, and donations.
"On March 13, 2017 Xavier Ray Jones entered the world at 12:54 p.m., 7 lbs 7 oz, kicking and screaming. Few weeks prior, Xavier was diagnosed via ultrasound with Pulmonary Atresia Intact Ventricle Septum (PA/IVS) His pulmonary valve, which blood flows through from the heart to the lungs to be oxygenated, was extremely narrow and his right ventricle, which pumps blood from the heart to the lungs, was abnormally small. We were told he would most likely need 3 open heart surgeries: One surgery to open the pulmonary valve and two surgeries to reroute the blood so his right ventricle would not be used. On the day Xavier was born, all was well. The doctors were amazed by how well he was functioning. The nurses were in disbelief when they were told his condition because he didn't act like a typical PA/IVS baby. He was pink, he cried, he nursed, and he breathed on his own without oxygen. These were all things we were told he wouldn't do at birth until his first heart surgery.
On March 20, 2017 Xavier was taken down to get a cardiac catheter done, which is a procedure where doctors examine the function of the heart and flow of blood. This procedure would tell us if his surgeries discussed with us during pregnancy were indeed the right ones to do. During the procedure, the doctors noticed his coronary arteries that feed the heart muscle, were abnormal. This could not be seen through ultrasound during pregnancy. His heart also was not beating properly. These two things combined put Xavier at great risk for a random heart attack. Just the stress of him crying like a normal baby could cause a spontaneous heart attack. Luckily, he is a calm baby.
After the procedure, the doctors came to tell us the news and where we could go from there. We were informed that because his coronary arteries were so abnormal, we could not do the original surgeries because they would do more harm. Our only option for Xavier is a heart transplant. We decided to proceed with getting Xavier put on the transplant list. We had many tests, meetings and papers that had to be signed.
Wednesday, March 22, 2017 at 7p.m. Xavier was placed on the transplant list at 1-A status, meaning he is in the most critical need for a heart and he is a top priority. He was placed on many medications to help not overwork his heart. He has been sedated and medically paralyzed so he doesn't cause himself stress. As time passed, Xavier slowly got stronger and his body adjusted to his heart function, but it's still not something he can live with. We were able to remove some of the sedation and remove the paralyzing medicine. We even held him again on April 24! This was the first time we were able to hold him in almost a month.
A few days later Xavier developed a fever and had to be paralyzed again to help him not overheat or overwork himself. He was generally not feeling well, on top of his heart condition.
On May 2, 2017 Xavier's heart rate dropped extremely low and his blood pressures tanked. They had to start CPR and administer Epinephrine (adrenaline) to get him back. Fortunately they were able to help him. Xavier is still in a very dangerous state and we do not know what his future holds. There is nothing else we can do for Xavier at this point. It is up to him and his little body if he can hold on to get a heart.
Receiving a heart, or any organ, cannot be predicted. We have no idea how long the wait will be. We have been at Lurie Children's Hospital in Chicago for 7 weeks and Xavier has been on the transplant list for 6. Once he receives a heart we are looking at another 2 months in the hospital after transplant."
Lindsey and Brian have two other children at home; Rylan (5) and Lily (3), who want nothing more than to see their little brother come home. As if Xavier's situation and being away from Rylan and Lily aren't stressful enough, the medical bills continue to add up. All of the proceeds will be used towards baby Xavier's medical bills. A donation of any kind will be greatly appreciated. If you are unable to make a donation, which is completely understandable, sending prayers and positive thoughts are appreciated just as much.
Thank you for taking the time to read Xavier's story, and thank you all in advance for prayers, positive thoughts, and donations.
Organizer and beneficiary
Krissy Wozniak
Organizer
Michigan City, IN
Bryan Jones
Beneficiary
