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.

Wednesday, April 21, 2010

Long awaited update

Our internet has been down for the past 3 weeks so I haven't been able to post an update. We did make it home with Hunter's line repaired. Unfortunately, after 2 days at home his line blew...literally....we ended up back in the hospital wondering if his line could be repaired a second time. Hunter did lose just over a pound while he was in the hospital because he was off his TPN. It was repaired and we waited the 24hrs to see if it would flush. While we waited we discussed our options if the line needed replacement. We decided we would go with a port-a-cath which is under the skin and accessed by a needle. The nice thing is that when Hunter is disconnected he can swim or bathe without worrying about getting his line wet. We were lucky and his line flushed and he didn't have to have it replaced. We went home with a feeling of contentment that we knew (for once) what would happen in the future.

Our contentment only lasted about 2 days because we got the resutls from an ultrasound of Hunter's kidney's that we had while we were in hospital. It had been scheduled for 3-4 months and we just happened to be in hospital when the appointment came up. We went for the results and they weren't good. Hunter has calcification on his kidney's which could cause stones or worse. The doctor said alot more but didn't "dumb it down" enough for me to explain. We are waiting for the results of the blood and urine they took which we won't get until the end of May. The results will tell us what is causing the calcification and hopefully it can be corrected...but there is a chance that the damage done is irreversible. So...we wait....

It feels like Hunter has gained back his weight and he is getting a mouth full of teeth all at the same time! He still crawls most of the time because he's much faster at it but he does make attempts at walking throughout the day.
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Sunday, April 4, 2010

Hunter's Line

After 1 year and 2 days...Hunter finally broke his line! On Saturday he stepped on his line and left it behind....we've been at the hospital since Saturday night. They were able to repair the line and now we wait for 24hrs to make sure it works properly. As always...Hunter's doctor is amazing...we were waiting for general surgery to come and fix it but they said they'd be back in 1/2 hour and never did come back so his "real" doctor came back from his Sunday dinner and repaired it....I love that guy!!

Hunter has been irritable but great as always...he's been able to see his former "Dream Team" nurses and they were excited to see how well he's doing. Tomorrow they will take blood cultures and do an xray to make sure all is well with the line...fingers crossed....and hopefully we'll be home at this time tomorrow!
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