Please knock on any form of wood before and after reading!!! haahah
We noticed lately that Hunter has not been vomiting...ever since the infection he had 1 year ago he has had an issue with vomiting....at times it was so bad he would vomit almost hourly! He was eventually started on two medications...panto IV to take the acidity out of the vomit/refluxing and metaclopramide which is used in cancer patients to reduce vomiting. The metaclopramide was a god send and reduced the vomiting to about 1-2 per day....we noticed lately Hunter has even been doing that so we thought we should take him of the metaclopramide and see what happens....its been 3 days and so far so good....we decided to stop the panto IV today as well....
We figured his little kidneys and liver don't need to be filtering anything more than is necessary and if the vomiting starts again...well...at least his body had a break from the medication....
We have been letting Hunter play in his food...he gets it everywhere and its a daily clean up mess....but he is starting to try new flavours and will put "puffs" in his mouth and actually wants to take a big bite out of pickles!! He also likes to drink apple juice and water out of mom and dads glass.....we give him some in a sippy cup sometimes but he has a meltdown when we take it from him....Hunter doesn't understand that if he has too much he could become dehydrated....he's really testing limits at his rip age of 18 months!!!
We decided to hire a live in nanny...we had one for about 3 weeks and she was given some terrible health news so she had to leave us....she was great and Hunter seemed to like her. We have hired another nanny who just started last week.....Hunter seems to like her as well so hopefully she works out and is competent to learn Hunter's TPN hook up and lock off....
Now that summer is almost over....I will try and keep the blog updated more than once every couple of months....
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.
Saturday, September 11, 2010
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