The surgery yesterday went well....Hunter was pretty fired up afterward! Once they tried the line it didn't work....nothing can be done the easy way for our little guy. The radiologist was paged and came back in last night to put in a new needle....it flushed fine but after he left it was not working again! The nurse tried a few tricks and it would work if she pushed the port to one side so we thought the it seemed obvious that the needle was not in the correct place. They tried putting TPA in the line but of course that didn't help. Hunter was exhausted and it took us a long time to get him settled. Poor little man had dark circles and bags under his eyes, he looked terrible. He finally went out for the night around 2300hrs and slept all night.
This morning the vein specialist came in (she has gotten to know Hunter quit well over the past year), she reinserted the needle and said it was out of place. It flushed well and they tried it out for an hour before letting us take Hunter home. I think Hunter was asleep before we left the hospital parking lot and we transferred him to his bed when we got home. We need to give him a saline bolus when he wakes up since he was shorted some fluid yesterday and likely each day since he's been there.
We were so excited to get a port for Hunter but it hasn't started out very well that's for sure...hopefully we will see the good in having it once we get over the learning phase.
Thanks to Janet for taking the time to get the IV in Hunter originally and for fixing his port this morning!! We really appreciate it......
Hunter Thomas Reeve was born on March 12, 2009 at 2:38 in the morning at St. Thomas Elgin General Hospital. Hunter weighed 6 pounds and was four weeks early but appeared to be a healthy baby boy.Although Hunter was eating well he was steadily losing weight. Three days after his birth Hunter was released from the hospital and made the trip home. Due to the weight loss Hunter was brought back to the St. Thomas hospital and after a series of tests it was found that Hunter was severely dehydrated. An IV line was started in the top of Hunter’s head because he was too dehydrated for the nurses to find veins anywhere else in his body.Hunter was rushed by ambulance to the Children’s Hospital in London, where he stayed on the IV while doctors and nurses diligently tried to determine what was causing the dehydration. By this time Hunter was down to almost four pounds and struggling to stay alive. Hunter fought hard (even managing to rip out the lines that the nurses kept putting in) and was stabilized thanks to the staff in the Pediatric Critical Care Unit. Without their care Hunter would not have lived through the night.After exhausting all of the non invasive tests, doctors from many specialty units were brought in to try and find out what was causing Hunter’s illness. Dr. Bax of the Pediatric Gastroenterology team was brought in, and in Hunter’s first week of life, he had his first surgery. A sample of Hunter’s small intestine was obtained through a biopsy and sent off for analysis. This is a rare procedure to have done on a baby and is not part of routine testing. Miraculously enough, this procedure determined the cause of Hunter’s decline: his small intestine was not absorbing any nutrients from his food. In fact, Hunter was outputting more than he was taking in.Hunter was diagnosed with an extremely rare and potentially life threatening disease of his intestines called Microvillus Inclusion Disease (MID). This disease prevents Hunter from absorbing any nutrients through his small intestine making him completely dependent on Total Parenteral Nutrition (TPN). TPN is very hard on Hunter’s liver but the only other option is a small intestine transplant.At first it seemed like a very grim prognosis as the complications with transplant are many. But there is hope: an experimental treatment called Omegaven. Omegaven couples Omega 3 fatty acids with TPN which greatly reduces the risk of liver damage and may assist in its repair. Unfortunately, Omegaven is not currently covered by the Ontario Health Insurance Plan (OHIP) or independent insurance companies.This disease only affects one in five million people. Hunter is the twelfth known person suffering from this disorder in North America right now. Currently there is no cure for Microvillus Inclusion Disease. Hunter needs constant medical care and the cost can be overwhelming to a family. There is very little coverage for in home support for families battling MID; as this disease is rare it is not typically covered by OHIP. Although Hunter’s Omegaven is currently being paid for it is unknown how long it will remain covered and what challenges this little boy will face in the future. Because MID is such a rare disease more research is needed to find other treatment options that are not as detrimental to the health of those affected. Hopefully someday this research will lead to a cure. Hunter needs your help to stay home. With your support we hope to make this dream a reality. Please help – because every baby deserves to grow up.
Thursday, June 17, 2010
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