"I like to draw because my brother does it and it is fun. I like drawing robots, dragons, aliens, monsters and strange creatures. Sometimes the strange creatures look funny. The aliens, robots dragons and monsters look tough. I like animals, I know a lot about them. I’m all about dragons. I like the Muppet Show and reading books. My favorite things are my family and stuffed lion Zane."
Alex is a renowned artist that has been featured in many publications including WICD News. People know from just one look at Alex’s work, that he is artistically talented. What people don’t know if his story…
Alex was placed on a vent right after birth. At 28 weeks, even with the steroid shots his lungs were too immature to handle to world that early. After 24 hours he started to breath over the vent, a very good sign, but only briefly. By the evening of his 2nd day he developed a pneumothorax, or a hole in his lower lung, and had to have a chest tube placed. Just hours later they found one in his upper lung as well. They had to remove the first tube and then reposition it as well as a 2nd one. They also had to switch him from a traditional vent to an oscillator vent, one that instead of pushing air into his lungs, circulated it. It is much gentler and would allow his lung to heal. He was moving along nicely, but after 2 days developed a burn from the taped bandage holding his chest tubes in. The next days passed slowly but on day 8 tube one came out, day 9 tube 2.
Then almost as if it were too good to be true, the girl was finally able to hold her Alex on day 10 for the first time. Not long after this, the Drs. found that Al had a brain bleed. It is very common in NICU babies, but still extremely scary to hear. As the next few days progressed the bleed got worse, but Al had to reach 4lbs before they could do surgery to relieve the pressure building in the brain. Yikes, brain surgery. When we met our Neurosurgeon, the girls first though was, “how in the world is that giant man going to be able to fix such a small baby!” The palm of his hand was larger then Al’s chest! Well the day finally arrived when Al reached 4lbs and they planned on doing his surgery. The boy and girl felt as if part of their world was ripped away as they wheeled their baby away.
Surgery went amazing, and the Dr. placed a tube into the ventrical that connected to a dome above the skull, but under the skin. They were then able to manually drain the excess fluid off his brain through the dome. As time progressed, he responded really well to the treatment. He then was able to start gaining weight, learn how to drink from a bottle, and keep up his own body temperature. Once he could do all 3 things at the same time, he could then continue his journey at home. When he reached 12 weeks old, very near his due date, the neurosurgeon determined that he would no longer need his device in his brain. So his 2nd brain surgery was planned, and done. Within 2 days all his tubes were removed, and they started talking about sending hime home!! Just shy of 13 weeks, Alex was released from the NICU and sent home with the anxious boy and girl!
Over the next 2 days they balanced being at home with Alex and still having his brother in the hospital. But on the 3rd day, their world crashed around them again. The girl knew something wasn’t right very early on that 3rd day. Alex was very upset and couldn’t get calmed down. She then found that he had a low-grade temp. The boy and girl loaded him into the car hoping that a car ride would get him to calm down, but set the destination as the hospital. By the time the 20 min car ride was over, Alex was even more upset and his temperature higher. The ER called his pediatrician, who thankfully came in, and after running some test determined that he was an extremely sick boy. They knew that they couldn’t get him placed back in the NICU, but called them anyway. By an absolutely miracle, they had enough nursing staff on hand, that they did in fact re-admitted him to the NICU. The biggest reason being that his brother was still there.
By that evening the boy and girl got the news that Al had meningitis. They assumed it was from his surgery, but it had been 5 days and seemed unlikely. (They never were able to give a clear reason as to why) Over the next 5 weeks Al fought a very strong battle, but the meningitis took it’s toll. The hydrocephalus that had previously cleared up, came back, and was worse. Alex had to undergo his 3rd brain surgery to have a shunt placed. He was able to overcome it, but it changed to direction of his journey. He was finally released from the NICU and started his journey at home, again. Over the next 6 months though, he would keep the boy and girl on their toes. He was in the ER more then he wasn’t and had to have 7 additional brain surgeries from June to October, to clear up his shunt from blockages. It was finally between the 6th (October 4th) and his 7th (October7th, 2002) that his neurosurgeon determining that the reason he was having so many problems was because his ventricles weren’t communicating, therefore overworking the one he had. His 7th surgery, which happened to fall on the boy and girl’s 1st anniversary, the boy’s moms birthday as well as the neurosurgeons birthday! Wow! At least it turned out to be a day to celebrate. Although occasionally having minor problems, it was his last brain surgery. 10 months old and had endured 10 brain surgeries.
Over the next years he started catching up developmentally. He started school and moved along nicely. He had to have his tonsils and adenoids out, and had hernia surgery (all before he was 3), but was proving to be the miracle that he was! By kindergarten, he was showing signs of underlying issues. There was thought that maybe he had ADHD or ADD, he was showing developmental delays, and other minor issues. Things that are not too uncommon with such a pre-term baby who had been so sick. Just in the past years, as he gets even older, we know that although he shows signs and symptoms of many different things (ADD, high functioning autism, and developmental delays), it is nothing specific that can be diagnosed. It all goes back to everything that he went through, meningitis, 10 brain surgeries, ect. He is so intelligent on so many levels, but it is sometimes the very basic things that he struggles with. Everyday though, the boy and girl are so thankful and grateful for everything that they went through, because the outcome is Alex!
There is no doubt that this story is a miracle. Alex is living proof that those with courage, even amongst the scariest times, can overcome any great obstacle.