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.
It continues...
The vomiting has continued and seems to get better than worse etc.....we were documenting every vomit to see if we could see some sort of pattern but there really isn't one...Hunter's doctor suggested we stop documenting it since we are driving ourselves crazy...we have had a stressful couple of weeks...not that much has really changed but there is another child (that we don't even know) who is not doing so well and that makes us think of Hunter's future. Of course we dont' automatically think of all the good things for his future...we think of the things we may have to face that no one really wants to think about...we are learning to laugh at ourselves and enjoy Hunter whether there is vomiting, stooling or whatever!
At Hunter's monday appointment he gained a little weight, he's up to 15lbs, 7oz.....they did an x-ray and ultrasound to see if they could find a source of the vomiting...everything looked great...which is good but then where do we go from here? His doctors have a theory that the antibiotics from his last infection killed both the good and the bad bacteria that grows in the gut...now there is an imbalance and it makes his gut unhappy....this can be perpetuated by a lack of eating...we had to stop the oral feeds when we were in the hospital so this seems to make logical sense....I love logic but Hunter's doctor said our bodies are not always logical! ahahah of course they're not....they said it could take months for Hunter's bacteria levels to get back to normal or they may not at all.
Hunter's top teeth look like they are going to pop through any day now and he is not so much crawling as pulling, rolling everywhere! He is talking non stop as well...very cute....Chris has heard Hunter say mamamamamam a few times but I have yet to hear it! Maybe Chris is just trying to make me feel better!! hahahaah
I've posted some halloween/recent pics of Hunter....
No comments:
Post a Comment