**Please note, this edition of Wyatt’s story was written back in February, for the Gala, it is not current, as Wyatt passed away Saturday May 16th, 2009. We will update the rest of the story as soon as his Mum is ready to write it, thank you for understanding”

Wyatt came into this world on April 27th, 2007 at 3:31pm. He certainly came in with a bang. Minutes after being born he was having trouble breathing and was turning blue the nurses thought he needed to be suctioned, they quickly realized something more serious was wrong. There where stat calls going overhead and the room quickly filled. They whisked Wyatt away to another room where they stabilized him (put in breathing tube, got iv's, gave sedation and started a medicine for his heart). They had called to make arrangements to have him airlifted to Sick Kids and were told SK was full and he would have to go to London or Ottawa. Then the doctors where informed the air ambulance was busy and would be for quite some time so Sick kids had to make room for him and they sent their Critical Care Response Team to pick him up. They arrived checked him from head to toe, muscle relaxed him and put some lines in his groin. He was at Sick Kids within hours of being born. There he would undergo lots of tests to try and diagnose the problem. The doctors were suprised at what they found. He has Pulmonary Artresia with ASD/VSD and MAPCA's. Basically he does not have the right parts for blood flow going to and from his heart. This is a very serious problem, fairly rare and he has the most severe of the defect. This also means that his blood oxygen saturation levels that are supposed to be 100% where his are in the low teens. He also has DiGeorge syndrome (the end of his 22 chromosone is missing). They decided they would let him rest for awhile and grow. Wyatt disagreed and they decided that he would have to go for a Cardiac Catheterization (they go through an artery into the heart where they can take pictures, measure pressures and fix some problems) They took him thinking they would make some improvements and he would need surgery when he was 6 months old. They wern't able to help him at all they where only able to get pictures and measurements. They thought surgery would be too much for him and decided to put a feeding tube in his nose and let him sleep and grow for a little while longer. Again Wyatt had alternate plans and not long after that I was being asked to sign consent for his first open heart surgery at 20 days old, that was to be very risky but he would die without. So away he went. He did well but it was along road to recovery with lots of downs and few ups. Finally we went upstairs where it is not so critical. There we worked on feeding which was a big problem for Wyatt he ended up having a feeding tube inserted in his through his belly bypassing the stomach because he has severe reflux and aspirates on it which causes damage to his lungs. They also tried every formula under the sun and finally found a pre-digested formula that seemed to be ok. He also had several bouts of necrotizing enterocolitis, which was very painful for him. He had a more permanent line inserted in his arm so he wouldn’t have to keep getting poked for iv's which generally to get one would take 2-10 pokes. We continued to have many ups and downs a lot of downs. A lot of close calls for Wyatt. He had to have another visit to the cath lab where they ballooned his left pulmonary artery which Wyatt didn’t tolerate very well. He spent another 3 weeks in the CCCU and then went back upstairs. Though through it all Wyatt was generally a happy smiley baby. He was poked and tested continually trying to optimize his health. We finally went home in the fall and were at the hospital a few times a week for various appointments. Then we returned in November '07 for his next surgery, the BT shunt. This was not supposed to happen till Wyatt was two years old but his heart was failing and it had to be done. So he had his BT shunt which was also a long surgery and recovered in the CCCU fairly quickly (for Wyatt) he was back upstairs the week before Christmas. We spent his first Christmas in our room at the hospital and he was generally in good spirits. He did still have his chest drain in because during the surgery they nicked his fat duct which drains until you stop eating fat and let it heal. They had to switch his formula which did not go over well. He continued to be a smiley boy and we went home on January 15th on January 16th we returned. We found out Wyatt had influenza A and was having problems with intusseption where his bowel was tunnelling back over itself. His feeding tube was causing this so after weeks of trying to shorten the tube little by little they finally had to take it out and give him nutrition by the line he had inserted in his arm. He started having trouble with his sats again and trouble breathing. He went for an MRI of his chest and they discovered that fluid was building up around the shunt they had placed in his heart. He had to go and have a tiny tube inserted through his chest into his heart to drain the fluid. They tried this for awhile and the site started to get infected so they had to remove the drain. The doctors decided if the fluid didn’t accumulate to quickly they would leave it alone as long a Wyatt tolerated it. We went home again for a few days and quickly returned with intusseption again. While we were there Wyatt started to have more trouble breathing, needed more oxygen and was sweating and vomiting. It was decided that he was in heart failure and was not tolerating the fluid around his shunt. His surgeon and cardiologist decided he needed to go for surgery again. While waiting to go to the OR Wyatt developed a blood infection they were going to try and hold off on the surgery but Wyatt was getting to sick so they took him on April 10, 2008. They did what is called an RV to PA conduit, muscle resection and unifocalization. Wyatt did well in the operating room considering he was in there from 8am till 7:30pm. A few hours later Wyatt started to look unwell and they called for the cardiologist to come and do an echo (an ultrasound of the heart) while waiting for that Wyatt's blood pressure dropped and his heart stopped. The doctors worked quickly and the room filled with doctors and nurses. They had to open Wyatts chest up to relieve the pressure from swelling. He was stabilized and luckily did not have to go back onto the bypass machine. Wyatts chest was left open for a couple of days and was then closed and left suspended to ease the pressure. Wyatt was left sedated and muscle relaxed for a few more days. They let his chest down and did an x-ray while the doctor was showing it to me I asked why he had a wire in his heart and was assured it must be stuck in a bone and it was fine. A little while later Wyatts surgeon came in and told me they had to go back into Wyatt and get that wire out before it does any damage. He thought it must have broken off when they opened his chest with the arrest. So they did, Wyatt tolerated it pretty well.  But after that Wyatt started having AET which is a type of arrythmia where his heart beats abnormally and far too fast (250-300 beats per min) The doctors had a lot of trouble controlling this and finally stabilized him on a continuous iv infusion of a medicine called amiodarone. They tried taking out Wyatts breathing tube several times after that and he kept failing this puzzled the doctors so they decided to do a CT of his chest. They discovered that his aorta and his new conduit (shunt) was compressing his airway. They decided he needed to have them lifted and went back into Wyatts chest and did what is called an aorta conduit pexy, which basically means they put stitches in and tied it around his ribs to relieve the pressure. They then tried for months to get the breathing tube out and Wyatt kept failing. After much time and lots of trouble it was decided that they should have a look inside his airway with a scope. They discovered his trachea was severely damaged from having the breathing tube in for so long and being taken in and out so many times. They treated him with steroids and tried to take it out again, Wyatt still could not breath without the tube. So after many meetings it was decided that he would need a tracheostomy, an artificial airway bypassing his nose and mouth. They thought this would allow him to come off the ventilator. It took a long time and a lot of trouble but we finally slowly weaned Wyatt off the ventilator for 4 hours a day. This was a great feat for Wyatt and happening just before Christmas '08. Just after Christmas he started failing off the vent and cannot tolerate any time off the ventilator, his oxygen requirements continue to rise and he was grumpy. Since April we have also been weaning all his sedation which has been a huge problem as Wyatt doesn’t like them being taken away. Wyatt went for another cardiac catheterization at the beginning of February where they discovered that his heart pressures are far too high, his left lung is getting very little ventilation and his right lung is getting very little blood flow. This is not good and his surgeon cannot do anything to repair it. Right now Wyatt is still on Morphine and clonidine to help with morphine withdrawl, calcium, vitamin d, dieuretics, thyroid medication, and a medicine to control his heart arrythmias. He has also had a few seizures. Currently Wyatt receives chest physio twice a day, occupational therapy once a day, he likes going for walks on his portable vent with me and this nurse, he has a bath every evening followed by a trach cleaning. In the past few days he started smiling again which he has not done since last April which is super nice to see. He loves to watch Baby Einstein, Backyardigans and Mickey Mouse Clubhouse. Wyatt cannot walk or talk or even hold his head up like most babies, but is very expressive with his face and I like to think I know what he is trying to say. Our world is completely different then most. We pray for Wyatt to make it through each day and work on rebuilding all the muscles and skills Wyatt has lost being bed ridden for so long.  He works so hard, he is determined and has the heart of a fighter. I am so thankful and proud to be the mother of such a wonderful boy. Wyatt is so brave and strong, I watch him and all the other kids in the hospital go through more in a day then most adults in a life time. Amazing absolutely amazing.  www.totsites.com/tot/wyatts