Happy summer everyone...it has been a long time since we posted...Hunter has overall been doing great but he has been dealing with a kidney issue for a long time...since his body does not absorb things orally it has been difficult to attempt to battle this problem. Hunter has calcification on his kidneys (nephrocalcinosis)...we attempted an oral med hoping he would absorb it sublingually but it was not effective. It has been an extremely stressful time for us since the alternative to finding a "fix" for Hunter's kidney's could be a multi organ transplant which we do not want. It came down to one other medication that Hunter's amazing pharmacist Sahar came up with. The medication is used to "lock" lines which we do to Hunter's line everyday using another product. We presented it to Hunter's team of docs and they took alot of precautions prior to allowing us to try this med...why? Because this medication has never been used, in the world, in the way that we are currently using it in Hunter. There could be serious side effects so they admitted Hunter for a couple of days in the paediatric critical care unit so he would have 1-1 nursing/doctors. They administered the med through Hunter's central line in a very small dose and we eventually increased it while in hospital. Hunter did not have a negative reaction so we were very excited. So far Hunter's blood work and urine #'s have been positive most of the time. We recently noticed that his urine looks more concentrated after he gets the med so we took a urine sample and his #'s improved alot! His docs are now looking at spreading out the medication dose throughout the day because his body is not sustaining it throughout the day. Hoping and praying this med is the answer.
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.