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.

Sunday, January 24, 2010

Meeting of the Minds

Hunter's doctors met and discussed the options for the vomiting....they are looking at a different IV medication, which of course is not covered...its not as crazy expensive as the omegaven was going to be but we are still thankful for the fundraiser since these unexpected expenses were a huge stressor prior to the event. We are going to try the medication for a one week trial to see if it helps. If that doesn't work than they discussed putting a G tube in Hunter's belly to drain the excess bile. Of course the final option if all else fails is a transplant....we've already said no to that....at this point Hunter is a candidate for transplant due to the 2 serious infections he had last year....we've been wrapping Hunter's line and (knock on wood) so far so good with not having an infection!! We really believe the stool was seeping in to the line from the outside.

Hunter had his first acupuncture treatment yesterday...the acupuncturist said it doesn't work for everyone but infants often see results more quickly than adults...we are going to do 6 treatments and see what happens....Hunter did sleep well after the treatment and slept for a solid 7 hours last night before waking to vomit at 3am...but then his usual...he was up every hour or 2 to vomit but slept solid from 6am until 8:15am which was nice for me!!!
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Sunday, January 10, 2010

Test Findings

Thursday test day was a long day but it did give us some answers..Hunter drank the dye and kept it down for a little while...he threw up during the x-ray which allowed them to see that his esophagus went into a spasm which triggered his stomach and he vomited...some liquid also went out the proper way it should at the same time so there is no blockage...it seems his nerves are over reacting due to lack of use....Hunter also had some blood work because of calcium levels and an ECG...his calcium levels are back to normal so hopefully they remain that way...the ECG is a precaution to one of the medications he may be started on...Hunter's doctors are going to meet on Wednesday to discuss options.

We are attempting to feed Hunter orally 3 times a day which we were doing prior to all this vomiting starting....we might also try some acupuncture to settle the nerves....you never know what might help..

Hunter had a better night last night...only up 2 times with vomiting....maybe a new trend?
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Wednesday, January 6, 2010

Yet Another Stuggle











We had high hopes for the new medication but it doesn't seem to have helped....the vomiting was better for the first day or two but its like Hunter's body became immune to it and he was back to vomiting almost every hour at night.....the grandparents have been great with coming up and letting us sleep at night while they get up with Hunter...we are scheduled for a Barium (sp?) test tomorrow morning where Hunter has to swallow some dye and they see what it does...hopefully he can keep it down...
Another issue that has been coming up is Hunter's calcium levels in his blood work...the levels are high so after the dye test tomorrow they will be doing more blood work to find out a cause...Hunter's doctor thinks it could be nephrocalcinosis...kind of like kidney stones but not I guess...he says its manageable and not to worry too much...easier said than done since we worry about everything as any parent would....

We will keep you posted with the outcome....

On a positive note we had a great Christmas so I'm adding some photos....
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