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Total Parenteral Nutrition
TPN stands for Total Parenteral Nutrition. This is a complete form of nutrition, containing protien, sugar, fat, and added vitamins and minerals as needed for each individual. It is admininstered through an intavenous infusion, usually using a central line. A central line is a special long lasting IV line that goes through a vein directly to the heart. It is usually placed on the chest, though sometimes if the location must be changed frequently it will be placed in other areas such as the groin or the neck.
TPN is a lifesaver for people who are unable to absorb adequate nutrition through their intestines. This can happen for a variety of reasons, Short Bowel Syndrome (SBS), Chronic Intestinal Pseudo-obstruction (CIPS), Eosinophilic Gastroentiritis (EG), Hirshprungs Disease (HD and various other diseases or disorders. Motility problems that lead to TPN usage can be very difficult to diagnose. Sometimes it takes many difficult or painful tests and procedures to come up with a diagnosis, and the diagnosis iteself can mean more unexplained health problems.
TPN is administered for varying hours on a daily or sometimes several times a week basis. Sean receives his TPN while asleep, so as to preserve his daytime hours with as much normalcy as possible. At one time he had to receive it 18-20 hours per day, so to have him "hooked up" for only 10 1/2 hours is much more pleasant for the whole family. Some people do have to recieve the TPN for up to 24 hours per day, the amount of time varies depending on the needs of the person combined with the adaptibility of the body to the fluid going through, in particular the sugars.
TPN is a miracle, in that it keeps people alive where they cannot eat to sustain themselves, but it also has many problems. It is very hard on the body, in particular the organs that are involved with digestion (liver, gall bladder, pancreas, etc.). It can cause damage or even complete failure in these organs, bloodtests must be done frequently to monitor the body's reaction to TPN. In addition, because the blood stream is constantly being opened to administer the TPN, it is quite easy for infection to enter and the person must then be placed on IV antibiotics. Sean has only had Staph and Strep infections, thankfully they were resolved quite quickly, but as the body is bombarded with these bacteria and the accomanying antibiotics it can develop resistance to antibiotics and it becomes more difficult to resolve the infection.
One of the drawbacks of TPN is that the organ damage may be severe enough to require transplantation. Transplants are difficult, life sustaining choices to be made, and if at all possible some oral or enteral (tube fed) nutrition will help to prolong the life of these organs. If you would like to donate funds to help those needing transplants, or have questions or desire more information about transplants or donation of organs, please see the following link, in memory of one very special little girl.
A listserve has been formed for people and families who are dealing with TPN, or have in the past. It is an awesome means of support, as we all live in different areas of the country, and the world in fact! If you are dealing with TPN issues, I invite you to join this list.
For further information or support on TPN or Enteral feeds, please contact
Home, CDH, Northwestern CHERUBS, Seans (long) story,
Short Bowel Syndrome, Gastrostomy, Fundoplication, Other Links
