WHAT: This sweet family is struggling financially with a very "tough" but sick little boy. See his mother's story below.
WHERE: Houston, Texas
WHY: Have you met this kid? He is awesome! He deserves some normalcy in his life. His parents deserve to catch a break and not feel like they are drowning financially, so they can focus on getting their son healthy!
By Ruth Alvarez
I met Landon when he was 2 years old and that's when he became my son. For one reason or another his birth giver is not in the picture, so I decided to take the responsibility of mom and caregiver. Everything in our live has happened so fast. It all started back in June of 2011, his birth giver left, my husband's father (his only family) passed away unexpectedly all while my son Landon was a few floors up getting treatment for his condition. That same week my husband lost his job and was kicked out by his landlord. Everything just crumbled down before we even knew what to do or how to make sense out of it.
After these hard blows in my husband's life, we began to build our own home and better days came along. Landon's health was getting better, he was born with a chronic illness called gastroschisis which happens in the womb when the fetus's abdominal wall doesn't close and they're born with their intestines outside of their body. They've also removed a specific amount of intestine calling it "short gut". He's had multiple surgeries since birth in which I've only been present for the most recent one that took place on November 12, 2013.
He is the strongest boy I've ever met. The will he has to live is unbelieveable. He has had his lung collapsed once after surgery and been at risk of bleeding from his brain, both times landing him in the ICU. He gets out of there with a smile on his face each time. This last surgery was the one we'd hope would finally end his struggle and he'd be able to be a normal kid for once. They were trying to fix his intestines because he has a recurrent bowel obstruction that would make him throw up up to 6 times a day and this would dehydrate him, throw his body off balance, bring him down on the growth chart and land him back in the hospital. Sometimes he'd be there for over a month or even be admitted every other week.
When the time came to have the surgery our world crashed again. His entire small intestine had scared together including his liver, they called it a "cocoon" there was nothing that could be done but to let him heal from the inside out. So he was left with a hole in his intestine that cannot heal anymore. He wears an ostomy bag around the site that holds in all the discharge that comes out, the smell is pretty bad and it burns his skin. He needs that bag changed every day and it's painful for him because the bag has to basically be glued on top of his burned skin.
Because of this problem he has not been able to eat any solid or liquid, except for a couple of ice chips three times a day since November 11, 2013. So you can only imagine the measures we have to take in order to sit down and have our meals. His only means of nutrition is through a PICC line which is also his only way of living. This last admission to the hospital scared the life out of us, we almost lost him. The hole in his abdomen is right above his PICC line, about 8 inches above his right thigh. That line has to be cleaned every week, it's pretty hard to keep it from getting infected when you have "feces" pouring on top of it.
Since he has been poked an infinate amount of times since his birth he has ran out of places where that line can be placed. Therefore, if that line gets infected again which can happen at any time it would be live threatening for him because there is no other way to give him his nutrients.
It is crucial for my son to get his transplant, we are walking on thin ice. The treatment for the infection was so harsh he is having renal problems right now. He is also receiving in total, three shots of medication per day. One is for a blood thinner which keeps his blood from clotting and his line from blocking (this already happened back in March and they put and IV in his neck) and the other two keep the discharge from his abdomen at a low amount so that he doesn't dehydrate.
This month alone he has received two blood transfusions, the list of problems and heartaches he has had to endure is countless, I'm only giving the basics. Still he never loses hope that one day his tummy will close and he'll be able to eat again. All he can think of is that he loves oranges and that he can't wait to bake cookies with us. He is one truly amazing, strong willed child that can pull through anything and there is absolutely not a single thing that can faze him.
On Monday July 14th, we were sent to Pittsburg for a five day small bowel transplant evaluation. After the initial evaluation the surgeons have decided to operate on him to see if his intestines are salvageable. His surgery is scheduled for Monday, July 21st. I have had to leave my son and husband behind to tend my other children back home. My heart is breaking because I'm not there next to him holding his little hand.
My family and I are working very hard to come up with the money to be able to afford all the day to day expenses. Living in the hospital is extremely expensive and we're almost out of money. We are truly thankful for all the wonderful people, friends, relatives, friends of friends, relatives and co-workers that have helped us out during this hard time for us. We thank you all so deeply from the bottom of our hearts.
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