I was just saying to a friend about a week and a half ago that I don't really know what we'll do when Hunter gets the common kids sicknesses...cold, flu etc....well two days later Hunter spiked a fever...he had been teething and had his usual rosey checks and diaper rash. The fever got to the point where Chris called Hunter's doctor and he wanted us to bring him in to emerge...Hunter's doctor called emerge and was told that all the beds were filled...he explained Hunter's condition (which they have a file for the size of a dictionary I'm sure)....she told his doc that since he wasn't critical they couldn't take him!! What...are you for real....his doc ended up calling other hospitals in teh area becasue with Hunter we never can be too sure if the fever is simply your typical kids sicknesses or if he is septic which means we need to get him in right away or things can go sideways in a hurry...I left work early and came home in anticipation of driving him 2-3 hours to a hospital that could care for Hunter properly...
Fortunately the fever broke and we decided to wait and see....Hunter seemed much better but the next day I brought him in to the doctor's anyway....Hunter had his first ear infection...we were able to get a presricption for antibiotics and we learned how to give them to him by gravity through his line...yet another tool in the tool belt for us....
Hunter has not been gaining much weight but what can you expect when the little guy was sick...so his TPN is being increased and hopefully we'll see some gains soon...Chris and I are becoming pretty efficient at putting in the port needle...we do it at home and have been getting it on the first try. Last week Hunter's needle was bent and we had to change it. When I took off the tegaderm (tape that holds the line in), the needle pretty much popped out...and it was bent...not sure how he did that but he slides up and down everything so I guess it was only a matter of time....he didn't seem to care which is the most important thing!
Hope everyone is having a great fall....Hunter has been loving the weather and would be out there 24/7 if we let him!!
Happy Hunting to all of the deer Hunter's out there...opening day today!
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.
Friday, October 1, 2010
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