Landon's story 2009

Landon was born October 7, 2009 at 9:44pm. He was 7lb 5oz and 22 inches long. He was considered full term at 39 weeks gestation. His first set back was the knot in the umbilical cord, which restricted the things he needed to grow. We did not realize what this small coincidental situation would play in the plan that God has for Landons life.

The story of little Landon began to unfold at the time of birth with what doctors said was Transient Tachypnea. The doctors first put him on a CPAP machine (Continuous Positive Airway Pressure) to help regulate his breathing. Friday at 4am he had developed a hole in the right lung causing it to collapse and they had to add a chest tube to keep the air pressure out of his chest cavity. Then at 8am the left side collapsed, now having bilateral chest tubes. Then at 11am they put him on a ventilator to do the breathing for him so that he could work on reparing the holes in his lungs.

The time passed and the chest tubes were doing their job at keeping the air out of Landons chest cavity and we waited on Landon to heal the holes in his lungs. It was a five day process to remove the chest tubes by first turning the pressure off one side then waiting 24 hours to make sure the hole was healed and then removing the chest tube. Then moving on to the left side 24 hours later. During this process Landon also had high bilirubin levels and developed jaundice and was then put under photo therapy for 3 days. Landon was then put on a small amount of oxygen thru a nasal cannula. He also had the IV taken out of his arm and bellybutton and was replaced with one in his head that lasted a few days. Getting him to bottle feed became his next struggle, he then received fluids thru a nasal tube that went into his stomach.

Landon was then off the nasal cannula except when he was eating by bottle. He was bottle feeding well by now and we just working on increasing the amount of fluids that he took in and number of bottles vs tube feedings per 24 hours. Days had gone by with no significant improvements and by this point we realized this goes much deeper than weak lungs and the knot in the cord. We began to question even more about his muscle development and eye movements. This is when the testing began and pieces of an elaborate puzzle began to unfold.

Landon went for a brain MRI on October 20th and a spinal MRI on the 10th of November with both exams showing no abnormalities. On October 22nd a genetics doctor sent off blood work for Congenital Myotonic Dystrophy, Spinal Muscular Atrophy, and Prader-Willi Syndrome. With the tests coming back normal and metabolic blood tests coming back in normal ranges we needed to dig deeper. We went thru several types of testing and blood tests to find out his story. He has had several genetic blood test that have come back normal and his chromosome micro array came back normal.

On November 6th Landon had his first Pnemocardiogram with PH probe study. This test showed us that he has all types of apnea problems and how many times he has oxygen desaturations. This test proved that he has trouble breathing with or without feedings. He has central apnea which is usually linked to a neurological problem. He was then given Caffeine Citrate for treatment of his apnea.

A Tensilon Test was given the next week to check for a myasthenia syndrome. Landon had some response to the test and was then put on Pyridostigmine Bromide medication to help with muscle movements. Landon then took a second pneumogram that did not show much improvement with his apnea and was then put on Caffeine twice a day.

Doctors felt he was ready to go home with just being on a small amount of oxygen. He was sent home with monitors attached to him that beeped and alarmed all day and night. He had a apnea monitor, heart rate monitor and a pulse oxygen monitor. Landon was doing a little better with the medications that they have put him on, one given every 4 hours and the others are every 8 and 12 hours so he is on a tight schedule. Not to mention his feeding schedule that usually took 45 min to 1 1/2 hours for him to feed every 3 to 4 hours.

We then went to OK City to see a neurologist for a EMG test. The test concluded that Landon has a neuromuscular junction transmission disorder. So our next step was to send his blood to a lab in Germany because they are the only place in the world that can do this special genetic test.

Landon was monitored closely by his doctors and when he had only lost a few ounces they felt he would do better with a gastrostomy feeding tube. This would be the second hospital stay Landon has been thru. He was admitted in to the PICU after surgery on a vent and ready to recover from surgery. After less than 24 hours Landon was off the vent and breathing on his own. This is when the shallow breathing and apnea spells alarmed the pediatric nurses and doctors, they felt Landon would be able to breath better thru a trach. On December 14 Landon went for yet another surgery to have a Tracheostomy. He was back in the PICU recovering well and was off the vent the next day. He was moved on to a CPAP mode machine to give him pressure support in his breathing and to make sure he did not have apnea spells. Landon had his second Fluroscope done on December 23rd and was released from the PICU to be home for Christmas 2009!
Going home for Landon this time was very eventful. There was a team of nurses and respiratory therapist that went home to get him set up with ALL his equipment and monitors. His room is overloaded with equipment, monitors, and supplies. He has part time help from nurses to keep up with his busy schedule of feeding, medication, breathing treatments, and physical therapy.

We are pending blood work and have scheduled appointments at other hospitals to help Landon get a diagnosis and hopefully move on to a cure.