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Stories of Christopher.

July 4 , 1978  -  Sept. 5, 2004

Christopher was Born on the 4th  of July, 1978.  What a celebration, what a firecracker he was. The youngest of 4. His sister Gina the oldest, his brother Mark next ,  and sister Edria. Each with their own personalities. Everyone was close and all got along good. Typical brother and sister scenarios. At age 2 Christopher was diagnosed with Cystic Fibrosis. It was a hard time with no one wanting to believe he had anything serious. The Doctor said to keep ahead of the Cystic Fibrosis and not let it get ahead of us.  It's something you hear about but not really paying attention to it until it hits home. What a wake up call to reality. Life changed somewhat,  but we made it as easy as possible for Christopher. Phara was trained to do his percussion treatments by hand. Pounding the lung areas in front and back and each side in a galloping rhythm technique. Christopher always liked his privacy and never wanted his treatments done in front of anyone.  Christopher would call them his pounding treatments.  This type of treatment loosened the mucus build up inside the lung areas .  This would cause Christopher to cough up the mucus and ease his breathing. It was an adjustment to do the treatments every morning , after school and before bed every day.  He also had to take breathing treatments  morning and evening to keep the airways open . It all  became a part of life and Christopher just went with the flow of things and never complained.  He had to take enzymes called "MT 20's ", 4 capsules with every meal. This helped his digestive system. Cystic Fibrosis  not only affects the lungs but also the digestive system. At least two times per year Christopher had to be admitted to have IV Antibiotic treatments to clear out infection in the lungs and open up the airways. Christopher always called his admissions. His "Clean Out" admissions.  He would say, "I have to go in for my clean out".  He would just laugh and take it all with stride. Christopher actually did very well all thru high school. Some ups and downs but over all things went well.  As he got older he started wearing XX large shirts, sweaters, jersey's anything to shield his heavy breathing. He never wanted his friends to see him breathe heavy. He would never tell anyone he had Cystic Fibrosis because he did not want to be treated differently. If his friends saw his breathing machine and asked what it was he would say he had asthma and the machine was for asthma treatments. If anyone noticed him taking his enzymes ( MT 20's ) he would tell them they were his vitamins.  He was very adamant on not telling anyone he had CF.   Christopher graduated from High School and enrolled in a Technical School in Phoenix, Arizona. He graduated with honors. He studied computer design for automobiles and engines. He loved cars and low rider trucks. He was very intelligent. Quick wit, fun and loved to play jokes on his mother . Christopher was so full of life.  Anyone who met him loved him. His friends adored him. If any of his friends had a problem he was always there to help. Christopher worked here and there after school. He did not let his Cystic Fibrosis hold him back. He worked at a flower shop after school making flower arrangements and decorations. His mother still has a beautiful wreath he made her with pink artificial roses.  Christopher worked at a Cookie place in a Mall. It was during the holidays and a lady asked him to make her a holly berry design on a large cookie. The first one she did not like and he started another one. She did not like that one and he made another one that also was not suitable to her and he shut off the lights of the shop and told her they were closed.  Christopher, Christopher. Needless to say he lost his job. He had a little side to him, but he was so precious. He continued on to work at other places with no other known instances. He never knew what it was like to take a normal breath like you or I. He just went on like all was ok. He always helped his friends if they needed anything. He would give his last hard earned dollar if he thought his friend needed it.  He was always there for anyone in need.  As time went on his lungs started to collapse. One side would collapse and he would have to be admitted to take care of it.  Several months later the other lung would collapse and this started to become a routine course to the point his doctors suggested doing a procedure where they attached the lung to the chest wall to keep it from collapsing.  After considerable thought and treatments it was suggested that Christopher be put on the Lung Transplant List. He was put on the list and in a week he was called that lungs were available. It was unbelievable how fast all had happened.  His transplant was a success. So successful that his doctors made him a mentor for other transplant patients . Before Christopher went into surgery an anesthesiologist came to talk to Christopher and after going over things with Christopher he asked Christopher if he had any questions and Christopher said, yes, "where did you get those shoes".  The doctor had a type of Italian Clogs on that impressed Christopher more than having any medical questions. :-). Christopher came off the respirator within 24 hours of the transplant surgery. His surgery was very successful. The first thing Christopher said was how good it felt to breathe without trying to breathe. Christopher said he felt like what people must feel like when they hit the lottery. He was so happy.  His mother told him, yes Christopher, you did hit the lottery, you hit the lottery of life. A few days later the Anesthesiologist who saw him before sugary came into the room with his face mask on and asked Christopher if he remembered him and Christopher said, yes, your the Doctor with the shoes. :-)  We all laughed. It was such a happy time. Due to the transplant surgery Christopher lost a lot of blood and he needed to have a transfusion. He was given three units of blood. The next day two nurses came to the room and told us they had good news and bad news. The bad news was they said Christopher received two units of untested and unfiltered blood. We were shocked to say the least. Christopher said, "what does that mean for me"? The nurse then said, the good news is we don't know for sure and they are checking things closely to make sure . We were panicked. This was a major set back and crisis for Christopher. It was unbelievable. Christopher's mother said she needed to know if the blood he received was from a CMV negative carrier, but they would not tell us. This was important. His lung donor was CMV Negative. If the untested & unfiltered blood was from a CMV Positive patient this could be bad for Christopher. Due to HIPPA laws we were not allowed to know anything they said. We said we do not want to know the donors name, but just need to know if the donor was CMV negative  or positive and also if that donor had any blood diseases that Christopher could get from the blood transfusion. Again we were told they could tell us nothing. We were told they would let us know if Christopher did indeed receive unfiltered and untested blood. Three days later the nurses came back  and told us , "Yes" Christopher did receive two units of untested and unfiltered blood. We were told how sorry they were , they did not know how this could happen but an investigation would be done to find out how and why it happened. We were never told the results of the investigation.  This was dreadful and heartbreaking. What was so happy suddenly turned into a nightmare setting of worry and concern. Due to this unfortunate situation Christopher had to take extra powerful medication over and above his transplant drugs to ward off the possibility of any blood transfusion problems. Christopher's mother had the FDA do an investigation into how and why Christopher received the untested and unfiltered blood since the hospital would not give us any information. We learned a doctor actually ordered the untested and unfiltered blood for Christopher.  Why?  This was unbelieveable because his mother who is the same blood type as Christopher and CMV Neg. could have given her blood to Christopher if it was needed. Christopher was finally discharged to home after 30 days. He was required to wear a mask if he went out into the public due to air borne bacteria ,  etc.  It was so important he did not contract anything. We were so cautious to make sure he would be safe even though he was put into a serious situation regarding the blood transfusion. There was never a feeling of being free of worry after learning about the untested and unfiltered blood. Time passed and it was 11 months after transplant and Christopher had to be admitted for his check up due to the type of tests he had to have. Christopher had to have a test done in the OR and was given a local anesthesia . When he returned from the OR we were told he had to have a transfusion due to him having a low blood count? We were concerned due to the previous situation of the untested and unfiltered blood. He had the transfusion but something did not seem right after the transfusion. Christopher was not himself and became ill but was discharged to home as sick as he was.  He was so sick that he could not walk to the car after getting out of the wheel chair and a bell hop picked him up and carried him to the car. No nurse even accompanied him with his mother from the hospital room to the lobby. It was unbelievable to me that they discharged him so sick.  The next day I had to call 911 to have an ambulance take him back to the hospital for readmission.  My dear son never came out of whatever happened but I have always wondered if the second transfusion of blood had anything to do with the unfiltered blood he was given prior to this transfusion. Did or could anything interact regarding blood. I could never get answers.  My dear son died of cerebral edema. Severe brain swelling that no one could give me an answer for.  I always thought if I was going to lose Christopher it would be due to his lung transplant, but never thought it would be due to the brain. He had a great brain and never had any brain problems. Months later after his death we learned he was given an overdose of medication due to communication issues between two doctors. Something killed my son and in my heart it was not his Cystic Fibrosis. My feeling is it had to do with the transfusions or overdose of medication. He was actually doing great when he was admitted for the 11 month checkup, but after admission something went very wrong. We did not sue the hospital. Money will not bring my son back but I had hoped to get to the bottom of his death so that what happened to Christopher would never happen to another patient. Many people ask what happened to my son and I have never really opened up to tell the real story, but now you know.   Christopher taught me much about life. He was good and never complained. He loved me so much and I loved him with all my heart. A mothers love never dies.

Christopher is gone but never forgotten.

                                                    Another Christopher Story

A few months after Christopher died I received a call from his friend Robert.  Robert told me he had a message for me from his mother.  I said,  what is the message Robert? Robert said his mother told him to be sure to tell me thank you for Christopher. I did not understand what he meant. I asked Robert why his mother said to thank me for Christopher. Robert said his mother was a patient in the hospital and he had to take care of his brothers and sisters. He had to make them dinner, help them with school work and get them ready for bed. After this was all done he wanted to go to the hospital to visit with his Mom but had no car to get there and it was too late to get the bus by the time he finished everything. Robert would call Christopher to come get him and take him to the hospital. Christopher would sit with Robert at the hospital for hours until Robert was done visiting with his Mom. Robert said his Mother died, but before she died she told him to make sure he thanked me for Christopher bringing him to spend time with her. I remembered how the phone would ring late at night , around 11 pm and Christopher would answer and shortly after I would hear Christopher going down the stairs and leaving the house. I would wonder where he was going so late and not getting in until sometimes 4:30 AM in the morning. I would wait up for him worried sick not knowing where he was. He was over 25 but still as a Mom I worried he was going to get sick due to his transplant, etc. When he would come in I would say , Christopher where have you been till 4:30 AM, I don't want you to get sick. He would just say, Mom it's ok. All is good, don't worry, and give me a hug and went to bed.  In thinking back I remembered those nights the phone rang and how he ran down the steps and out the door and wondered where he would go that late and not return till early hours of the morning.  Now I know and he never said. This was my son, he never wanted me to worry and he did such a good thing for his friend so he could spend time with his dying mother.  This was my Christopher.