Andrew's Biography

December 2004

Andrew David Pisarczyk was born on December 7, 2004. Just a few weeks after birth, Andrew became very difficult to feed. Andrew was not gaining weight, and it became so severe in April of 2005, that he was hospitalized for failure to thrive. The hospital ran some tests, and came back with nothing, so Andrew was released a few days later.

Summer 2005

In June, Andrew was still not gaining weight, even after trying any and every formula available on the market. It was then, that the doctors decided to put in a feeding tube. Even after this, the feeding tube did not seem to be doing its job. Andrew began to vomit his G-tube feedings and was still not gaining what he needed to survive. Then on July 20th, Andrew was rushed to the emergency room because he seemed to be having problems breathing. It was discovered that Andrew had pneumonia. He underwent a bronchoscopy, and suffered respiratory failure, but doctors managed to bring Andrew back to us! Unfortunately for Andrew, this was just the start…

The results from the bronchoscopy did not give doctors enough information to determine what exactly caused the pneumonia, and they were still stumped as to why Andrew was not gaining weight through the g-tube. After being in the hospital since July 20th, they finally decided that Andrew should be transferred to Children’s Hospital of Philadelphia (CHOP).

On August 4, Andrew arrived at CHOP. The doctors at CHOP had more answers in 5 hours then all Andrew’s doctors had in 8 months! The doctors did a blood gas on Andrew and the numbers were terrifying. His PH level was 7.23, a level of 7 and below is a comatose state. His carbon dioxide level was 72, it should never be greater that 45, and a level of 110 is difficult to revive. An x-ray of his lungs noted a mass in the upper right lung. After a CT of his lungs and other organs we found out that his lungs that are towards his back were collapsed in areas and that a mass of unknown origin was present. Within another week Andrew’s bronchoscopy, CT and x-ray results were repeated and reviewed by CHOP’s pulmonary team and it was concluded that he had aspiration pneumonia completely defused in both lungs. What was to come was very unexpected...

On August 19, 2005, Andrew went into full respiratory failure. Blood gases reported that Andrew had a c02 of 130 and a PH of 6.9. The only way to save Andrew’s life was to place him on a ventilator through his nose. Andrew remained intubated for 6 weeks before being extubated to a BIPAP machine (non-invasive ventilation).

Even after being in CHOP and experiencing a team of doctors who were determined to figure out what was wrong with Andrew, Andrew was growing weaker and weaker. He only weighed 9 lbs, and the doctors were concerned about his condition. They wanted to perform a surgery called fundoplication. During the fundoplication procedure, the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured (sewn) around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus and thereby reduces acid reflux. Doctors were sure that this procedure would be a key component in correcting Andrew’s pneumonia problem, and help him to gain weight, but were concerned that Andrew might be too weak. On August 25th, 2005 the surgery was completed successfully.

Fall 2005

To be sure that the physicians were not missing any under laying diagnosis the surgoen’s also completed a muscle biopsy during the fundoplication surgery, Then the inevitable happened results came back from the muscle biopsy. The results showed that Andrew had Mitochondrial Myopathy.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. To date, there is no cure for mitochondrial diseases.

The news was devastating to say the least. Andrew was not just fighting to breath, he was fighting for his life.

Doctors at CHOP decided that the best thing to do would be to transfer Andrew to Columbia Hospital (NY) to consult with Dr. DeVivo, a world renowned physician, who has done extensive research on mitochondrial diseases. We all hoped that the results Dr. DeVivo found would be different than the diagnoses they had been given.

Andrew arrived at Columbia on October 14th, and the 2nd muscle biopsy was taken, and so began the second round of tests. Andrew was still reliant on the ventilator, and it was decided that the best scenario would be to do a tracheostomy (breathing tube inserted into the trachea). Soon after the surgery, Andrew started to have seizures. The seizures lasted for about a week, and then subsided. Extensive tests, including spinal taps, were done with no recognizable results of why they were occurring.

To confirm our worst fears, the results from the second biopsy came back. The results coincided with the first set; Andrew’s diagnoses would stay as Mitochondrial Myopathy. The worst news was that no doctor had ever seen a case like Andrew’s. His symptoms were presented in a way that no one had answers to. We still are unsure of how his disease will progress, and what we could expect in the future.

On November 16th, Andrew was again transferred to Children’s Specialized Hospital (NJ). Andrew celebrated his first birthday here. It was a bitter-sweet milestone. We were all so blessed to be celebrating Andrew’s first birthday, but wishing that it was under different circumstances.

December 2005

Finally, the day we were all waiting for; after 5 long months in the hospital, Andrew came home on December 14, 2005. It goes without saying, that it was a joyous moment. No one cared that he was on a ventilator, and had a trach, needed oxygen, or was still being fed through his G-tube. He was finally home where he should be, equipment and all!

Andrew celebrated Christmas with his family, and for the first time in many long months, his family felt a sense of normalcy, or as close to that as can be expected.

Andrew has been home for over a month now, and we are thrilled. He still relies on a ventilator and oxygen, and is breathing through a trach. He is also still being fed through his feeding tube, but he currently weighs in at 23 whopping pounds! He does have severe muscle weakness, but is in intense physical and occupational therapy to hopefully strengthen some muscle. Most recently, Andrew has encountered hearing loss, but has not been determined as yet if some/all hearing can be regained. Andrew is also undergoing treatment to help him regain his swallow instinct. He is a very busy guy these days and has alot of important doctors to visit!

Andrew has been a fighter from the beginning, and doesn’t seem to be giving up his fight anytime soon. He has been through so much in his short life, and we pray that God will be kind to him. We are so blessed to be able to see Andrew’s adorable little face every day, and hope that someday soon, we can find a cure to fix Andrew!