Xander (2013)

Update: March 2014

Since Kenna's Kids event last year Xander has spent a lot of time in the hospital including a week at Texas Children's Hospital in Houston. There Xander was diagnosed with Allgrove Syndrome. This progressive disease slowly effects the messages going from the brain to the body to control any functions that should happen automatically. He has spent a great deal of time in the hospital dealing with some of the effects of this. At this time several systems have halted their function and we have yet to find a way to reverse it. Most recently his digestive system has shut down and he now relies on a picc line (iv directly into the heart) to provide tpn(nutrition). There is discussion of possibly looking for which parts of the intestine aren't working and removing them but we haven't moved forward on this at this time. We have also learned that he has developed another hole in his heart which contributes to his oxygen levels being low; since they know it is a hole and not the lungs they took him off the oxygen! He is happy to not have to be attached to oxygen; and they will intervene in the future to further repair his heart when it is necessary. Right now he has been home for almost 2mos which is the longest he's been home in a long time! He has a lot of nursing care and many many appointments he must go to, but it's worth it to be home. He loves having his teacher come to his house each week and Skype to school with his classmates. He still loves to move and groove and show off his dance moves. He is a very happy kid that helps us all appreciate the little victories and joy every morning!!

- Marsha Wade

Xander's Story...

On April 13, 2008 our family was blessed with the arrival of our son Xander Thomas Wade. Weighing a very healthy 8lbs 6oz, and being a long 21inches; everything seemed normal. After going to the nursery for his routine check, we were informed that Xander's heart was far from normal and he had a very hard and long road ahead of him. After transport to Medical City; test results came back and he was diagnosed with Hypoplastic Right Ventricle, Pulmonary Valve Artesia, Patent Ductus Arteriosis, Arterial Sinusoids, Atrial Septal Defect and a very small Tricuspid Valve. Lots of big words that mean his heart had grown in such a way that the blood returning to the heart could not get to the lungs to get the oxygen it needed. When the pulmonary valve did not develop at all and the tricuspid valve did not develop properly, it caused the right ventricle to in turn become small with a very thick muscle wall. Since the intake of the Right Ventricle was small and the outflow was closed the pressure within the chamber was high and the blood in turn developed tiny vessels (sinusoids) so the blood would have a place to go. There isn't much we know about sinusoids other than they are dangerous and can cause any surgery within that ventricle to be potentially fatal. The Patent Ductus Arteriosis or PDA is something everyone has in the womb but it is supposed to close at birth. Miraculously, Xander's PDA remained open providing a pathway for the blood to reach the lungs and get oxygen. If his PDA had closed it would have been fatal. On April 21st he was taken to surgery to have a Blalock-Taussig shunt put in. After a very long 4 hours Xander's surgery was complete and he began his long road to recovery. He was in the CHSU unit for about a week followed by a couple days on the pediatric floor before being discharged to complete his recovery at home. On June 17th Xander quit keeping down his food and after meeting with the pediatrician it was decided that it was in Xander's best interest to be admitted to Children's Hospital of Dallas to try and get Xander rehydrated and find out what was causing all the problems. As with all heart babies he received an echo and chest x-ray upon admission. After evaluating Xander's x-rays and echo it was discovered that his heart was unusually enlarged and that the ASD or small hole between the atriums was tight (trying to close). Xander underwent a upper GI series to check on his stomach which came back fine. It was assumed that the heart not functioning at a good capacity was causing the vomiting. A sort of body's way of alerting us to trouble. Dr. Leonard our cardiothoracic surgeon explained that he felt the sinusoids were no longer a threat and he wanted to open the Right Ventricular Outflow Tract, meaning he wanted to open up where the pulmonary valve should be. He also wanted to take out some of the muscle bundles that were inhibiting the right ventricle; and widen the ASD. Xander would need to be placed on the Heart Lung Machine for the operation and it would be a much more complex procedure compared to the first. After MUCH prayer we agreed that this would give Xander the best quality of life and he was scheduled for his second open heart surgery for June 25th. After 5 really closer to 6 VERY long hours he had come through the surgery. Dr. Leonard was able to do everything that he had hoped and the prognosis was good. Xander, being the fighter that he is, stayed in CV-ICU for only two days before going back to the Cardiology floor. About 10 days after surgery on the 4th of July Xander came home for the second time. Sucking on a bottle is extreme work so he has an NG tube that bypasses the work and allows him to get all the calories and nutrients he needs. Speech Therapy will be coming to our home to help us on the endeavor back to bottle feedings. While in the hospital Xander began to have seizure like episodes. He had a Neurology exam, and they agreed that he may be having petite mal seizures. His EEG and MRI both came back normal however we may need to follow up with a Neurologist at a later date...

Xander has had three surgeries and with respect to his heart is doing well. He does not have a pulmonary valve - which is common at this stage, they usually like to wait till their older. Xander's biggest challenge is dysautonomia (a neurological disorder). This is where the part of the brain that controls breathing, heart rate, body temperature, adrenal, bladder and intestinal function, etc ceases to work properly.

This life is all he has ever known - he is a very happy, imaginative and loving child.

"Real superheroes live in the hearts of small children fighting big battles."

Links

Follow Xander's journey on his Caringbridge page.