Well its been a long week...the doctor's discussed Hunter's rectal prolapse and a liver biopsy. A rectal prolapse occurs because the muscles and ligaments that hold the rectum in place are weak. It can occur in elderly people, people with long term constipation, long term diarrhea, pregnancy, childbirth etc. They are not concerned about the prolapse which apparently many babies have and will outgrow. Hunter's prolapse is very mild.
Hunter's doctors discussed trying two methods to help reduce his liver inflammation. They also discussed taking a biopsy of his liver in the next couple of weeks if his billi levels continue to rise. Another surgery is not something we were looking forward to.
Luckily for Hunter, his blood work yesterday came back with great results. We have been waiting for his billi levels to come down and they finally did!!! They dropped approximatley 25 points. His skin and eyes do not look as yellow and his hemoglobin level went up ( so no blood infusion this week)! He's been gaining weight this week as well...he's almost 9 pounds!!!
Hunter is still off his TPN 5 hours a day and saline is run through the line while he is off to keep the vein from collapsing. Today they "hep locked" the line meaning he was "hands free" for 5 hours....it was awesome to be able to walk with him without having to drag an IV pole behind him!
We've also been told we can bring him home June 1 and the omegaven will be paid for!! The omegaven is the biggest expense we will have when he comes home so that is a huge relief. There are still other medical costs to expect and he does not qualify for nursing care.
A HUGE thank you to Erin McMullen and Dan Boyko who ran the Ottawa marathon in their blues and boots to raise awareness for Microvillus Inclusion Disease. You guys are awesome...I hope you're feet aren't hurting too much today!!!
Please feel free to leave a message of encouragement to Hunter and his parents in the comments area. Thank you to everyone for showing their support, we'll keep you updated.....
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.
Monday, May 25, 2009
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