Tuesday, January 8, 2008
MY SON - by Natalie (Cody's Mum)
Born 7 February 1991, conceived in a violent electrical storm - at 28 weeks into my pregnancy with Cody I nearly succumbed to a vile bacterial infection which ended in double pneumonia which was undiagnosed due to incompetent gp who told me I was a reactive pregnant woman (neurotic I think he meant) bahumbug and BAH- eight weeks after becoming ill I ended up severely ill with a collapsed lung and the other not far off collapsing I had weeks of physio to clear the gunk plus very strong iv antibiotics in hospital. Cody may or may not have been affected by these bowel stripping antibiotics(for me the drugs caused a condition called clostridium difficale which caused weeks of agonising bowel spasms and chronic on the toilet every ten minutes bum eruption haha- until miracle acidophilus yoghurt sorted that out) - Cody was born with an extremely rare condition called Malrotation Volvulus which affects one in 350 0000 infants or thereabouts - his condition was not picked up until recently - with Malrotion Volvulus the entire bowel is assembled very randomly - it kind of hangs messily and tangled with no anchorage - in a normal bowel the small intestine which is extremely long is anchored in a central area with the large bowel anchoring it and keeping it all together - Cody's bowel hang around in a loose kind of way allowing things to twist in a not to good for existence kind of way - Cody had throughout his life suffered periodic bouts of what was diagnosed as chronic constipation which made him sick and suffer pain - what was probably occurring was the bowel was twisting and untwisting - five months ago on the 12 September 2007 his bowel did not untwist and three days later he ended up having to have all but six inches of his small intestine removed and all but a metre of his large intestine removed as the whole lot had strangled mid gut and become narcotic (dead) Now we can live without a large bowel (colon) but we cannot live without a small bowel (intestine) the small intestine is where the nutrients from our food is distributed through the body - now Cody is left with no way for the nutrients to be naturally distributed so he needs total parental nutrition (tpn) which is fed through a line which enters his blood system through a large vein via a piece of tubing called a Hickmans line- this requires a pump as well which he hooks up to for twelve hours every night - unfortunately the tpn is hard on the liver and Cody is a target for nasty infections or bugs which can enter his blood stream via the Hickmans - Cody needs to be vigilent with hygiene as the administration of anything into his Hickmans requires sterile technique - Cody is currently recovering from one of these line infections - the infections have a potential to kill him and it is one thing that we fear. Cody has completed his course of antibiotics for this bug which has made him feel pretty crappy as they are strong antibiotics - Out of the nearly five months Cody has spent a great deal of time in and out of hospital and will go in next week for a operation to repair some of the damage and hopefully enable him to reduce the amount of tpn required so keep the liver in better nick - the transplant is not an operation that is easy as it is extremely hard to recover from and has a high risk factor - Cody will probably require several organs to be transplanted including his liver we won't really know until we get to Canada - Probably his liver and the small intestine - i think i was told that its easier to do the liver as well as its all plumbed that way anyway. He blows me away as he's such a tough guy and brave as he has some level of ick everyday to deal with - a lot of the time he deals with awful nausea and vomiting or his duodostemy leaks which burns him or his hickmans clogs up as happened yesterday which unfortunately caused one of the lumens (lines) to split so next week as well as the resection of the bowel he will need a new Hickmans' inserted which is done by a radiologist via camera - he injects himself with a substance called octiotride which keeps his system from building up too much fluid - he has a metabolic disorder as well due to all this body bother. But he is one inspiring sixteen year old - he gets frustrated and hates going into hospital but gets on with the day to day stuff and is as happy as he can be within this - I admire him and thank god or whoever is looking out for him for his life and the precious gift that is him.