Cystic Fibrosis meds for baby Declan
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DECLAN'S STORY
"‹Declan was born on July 16, 2013. He was six pounds two ounces and seventeen inches long, he was perfect. The next forty eight hours after his birth everything quickly changed. Declan became constantly fussy and could not be soothed. He would eat and still scream but the doctors were not sure what was wrong with him. When Declan and I were discharged from the hospital, Declan had lost weight and weighed five pounds two ounces and began looking sick. The following day I met with the pediatrician and had Declan evaluated. The plan was to go to the pediatrician every other day and have him weighed while keeping up with his input and output. After two weeks with no weight gain Declan was sent to Texas Children's Hospital. After undergoing numerous tests Declan was diagnosed with a rare form of Cystic Fibrosis, first person in the United States with this type second person in the world. Cystic Fibrosis is a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infection. Cystic Fibrosis is one of the most common and fatal chronic lung diseases in children and young adults, only about 45% of children live past their seventeenth birthday into adulthood.
"‹After Declan's diagnosis everything in his life drastically changed. Declan has been hospitalized currently twenty times due to his Cystic Fibrosis disorder and in the emergency room from complications around thirty times. Every day is a fight for Declan's life just to breathe. His hospitalizations have resulted in more medications, harsher treatments, and lots of pain. He has been hospitalized for Cystic Fibrosis exacerbations, blood in his mucus, numerous lung infections, fever and vomiting, gastrointestinal problems, seizures, and for breathing problems. Through it all Declan continues to smile through the procedures, the anesthesia, The IV's, the PICC lines, the blood draws, urinalysis, medications, breathing treatments, respiratory therapy, physical therapy, occupational therapy, and everything else you could think of. In Declan's eight months of his life he has been hospitalized for a good portion of it.
"‹Declan has a long extensive list of medications that he takes on a regular basis. For his GI problems Declan takes Nexium twice a day, Bethanechol three times a day and Zantac three times a day. He has severe GI problems due to the mucus built up in his intestines and stomach which in turn gives him severe reflux disease, GERD, and silent reflux issues. Declan's reflux has been so bad that he has stopped breathing due to it in the past. For his pancreatic problems and liver issues he takes three 6,000 unit capsules of Creon before every bottle and anytime he has a meal or snack. The Creon is crushed up pig pancreas that helps his body to absorb his food when he eats. Declan has to finish all his meals in thirty minutes or less because that is how long the capsules last, after that his body will not absorb anything. If Declan does not take Creon before every meal he will begin to rapidly lose weight from malabsorption. Declan takes 17 grams of Miralax a day so that he is able to have bowel movements every day. Since Declan has a hard time with formula he now has to use the prescription only Hypo genic kind called Neocate. Declan's body needs extra vitamins on a daily basis so every day he takes aquadeks, poly vi sol with iron, vitamin k, lactobacillus, and two servings of salt. Since Declan gets rashes and thrush being on so many different medications and inhalers he also gets oral Nystatin four times a day and topical Nystatin every diaper change. To help with Declan's lung function he has an intense regiment. Declan takes four puffs of a Xeopnex inhaler every four hours, Hyper Sal nebulizer treatment twice a day followed by twenty minutes of chest therapy and a steroid medication once a day.
"‹Recently Declan contracted a new infection called Pseudomonas in his lungs which is causing significant problems for him. The Pulmonary doctors want Declan to do a breathing treatment twice a day of Tobramycin for twenty eight days. Afterwards Declan will have another sputum culture done to check and see if the infection is gone or not. This specific infection is extremely hazardous to Cystic Fibrosis patients and causes a lot of scaring on their lungs and makes it feel like they are trying to constantly breathe air in and out of a small drinking straw. Declan has had increased coughing, sneezing, fever, vomiting from extra mucus production, lethargy, and just over all not feeling well. It is inevitable for Cystic Fibrosis patients because at some point in time they will typical contract the infection it is just usually a matter of when. Declan caught the infection at a very young age, which is not typical but he has a rare form of Cystic Fibrosis, and this pose a threat to his future health and life. The Tobramycin prescription that is needed cost $6,000.00 and insurance is refusing to pay for it. In order for Declan to get past this ordeal he needs the prescription immediately otherwise he will end up back in the hospital after the infection has become severe. I currently am not able to work because Declan cannot be around other children so I stay home with him. He also has doctor's appointments or therapy on a regular basis so I also am taking him to all his appointments or making trips to the hospital.
"‹No little boy or anyone for that matter should have to endure everything he does on a regular basis. He is the strongest person I know and always has a smile on his face. To keep the smile on his face he needs the Tobramycin medication that cost $6,000.00 that I am not able to afford. Thank you for anything you are able to do to help my son with getting this prescription.
"‹Sincerely,
"‹Kayla Clark
"‹Declan was born on July 16, 2013. He was six pounds two ounces and seventeen inches long, he was perfect. The next forty eight hours after his birth everything quickly changed. Declan became constantly fussy and could not be soothed. He would eat and still scream but the doctors were not sure what was wrong with him. When Declan and I were discharged from the hospital, Declan had lost weight and weighed five pounds two ounces and began looking sick. The following day I met with the pediatrician and had Declan evaluated. The plan was to go to the pediatrician every other day and have him weighed while keeping up with his input and output. After two weeks with no weight gain Declan was sent to Texas Children's Hospital. After undergoing numerous tests Declan was diagnosed with a rare form of Cystic Fibrosis, first person in the United States with this type second person in the world. Cystic Fibrosis is a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infection. Cystic Fibrosis is one of the most common and fatal chronic lung diseases in children and young adults, only about 45% of children live past their seventeenth birthday into adulthood.
"‹After Declan's diagnosis everything in his life drastically changed. Declan has been hospitalized currently twenty times due to his Cystic Fibrosis disorder and in the emergency room from complications around thirty times. Every day is a fight for Declan's life just to breathe. His hospitalizations have resulted in more medications, harsher treatments, and lots of pain. He has been hospitalized for Cystic Fibrosis exacerbations, blood in his mucus, numerous lung infections, fever and vomiting, gastrointestinal problems, seizures, and for breathing problems. Through it all Declan continues to smile through the procedures, the anesthesia, The IV's, the PICC lines, the blood draws, urinalysis, medications, breathing treatments, respiratory therapy, physical therapy, occupational therapy, and everything else you could think of. In Declan's eight months of his life he has been hospitalized for a good portion of it.
"‹Declan has a long extensive list of medications that he takes on a regular basis. For his GI problems Declan takes Nexium twice a day, Bethanechol three times a day and Zantac three times a day. He has severe GI problems due to the mucus built up in his intestines and stomach which in turn gives him severe reflux disease, GERD, and silent reflux issues. Declan's reflux has been so bad that he has stopped breathing due to it in the past. For his pancreatic problems and liver issues he takes three 6,000 unit capsules of Creon before every bottle and anytime he has a meal or snack. The Creon is crushed up pig pancreas that helps his body to absorb his food when he eats. Declan has to finish all his meals in thirty minutes or less because that is how long the capsules last, after that his body will not absorb anything. If Declan does not take Creon before every meal he will begin to rapidly lose weight from malabsorption. Declan takes 17 grams of Miralax a day so that he is able to have bowel movements every day. Since Declan has a hard time with formula he now has to use the prescription only Hypo genic kind called Neocate. Declan's body needs extra vitamins on a daily basis so every day he takes aquadeks, poly vi sol with iron, vitamin k, lactobacillus, and two servings of salt. Since Declan gets rashes and thrush being on so many different medications and inhalers he also gets oral Nystatin four times a day and topical Nystatin every diaper change. To help with Declan's lung function he has an intense regiment. Declan takes four puffs of a Xeopnex inhaler every four hours, Hyper Sal nebulizer treatment twice a day followed by twenty minutes of chest therapy and a steroid medication once a day.
"‹Recently Declan contracted a new infection called Pseudomonas in his lungs which is causing significant problems for him. The Pulmonary doctors want Declan to do a breathing treatment twice a day of Tobramycin for twenty eight days. Afterwards Declan will have another sputum culture done to check and see if the infection is gone or not. This specific infection is extremely hazardous to Cystic Fibrosis patients and causes a lot of scaring on their lungs and makes it feel like they are trying to constantly breathe air in and out of a small drinking straw. Declan has had increased coughing, sneezing, fever, vomiting from extra mucus production, lethargy, and just over all not feeling well. It is inevitable for Cystic Fibrosis patients because at some point in time they will typical contract the infection it is just usually a matter of when. Declan caught the infection at a very young age, which is not typical but he has a rare form of Cystic Fibrosis, and this pose a threat to his future health and life. The Tobramycin prescription that is needed cost $6,000.00 and insurance is refusing to pay for it. In order for Declan to get past this ordeal he needs the prescription immediately otherwise he will end up back in the hospital after the infection has become severe. I currently am not able to work because Declan cannot be around other children so I stay home with him. He also has doctor's appointments or therapy on a regular basis so I also am taking him to all his appointments or making trips to the hospital.
"‹No little boy or anyone for that matter should have to endure everything he does on a regular basis. He is the strongest person I know and always has a smile on his face. To keep the smile on his face he needs the Tobramycin medication that cost $6,000.00 that I am not able to afford. Thank you for anything you are able to do to help my son with getting this prescription.
"‹Sincerely,
"‹Kayla Clark
Organizer
Kayla Clark
Organizer
