Yesterday we decided to take Hunter on his first outing to the grandparents for a couple of hours...it went well...he was disconnected for 5 hours and when we hooked him back up at the grandparents we decided to make the drive back home (1 1/2hrs). Before we left we noticed there was air in his line that made it passed the filter (again!), no alarm went off on the pump and we were lucky to catch it (again!)...we fixed the occlusion and we left for the ride home....we got onto the 401 and drove just east of the Ridgetown/Thamesville turnoff...we heard a loud bang under the Jeep...hhmmm....then my steering started to go...great.....not crazy go but there's something definitely wrong...we pulled over and saw a lovely flat tire in the rear tire that I just had fixed the day before. So now we are on the side of Hwy 401, Chris is changing a tire, I'm standing in the ditch with Hunter since there are so many inconsiderate drivers on the 401 who refuse to get into the left lane when someone is fulled over (mostly truckers!). And of course I notice yet another air bubble in Hunter's line which has made it passed the filter and could potentially go into him...well doesn't that just top off the experience....Chris gets the tire changed and we get back into the Jeep and close everything up that we can so it is the most sterile we can have it and fix the occlusion! Hunter is screaming of course because...well....who wouldn't be! You would think this would be the end of the story......we pull onto our street and the pump starts beeping....the battery is dead! At least we were close to home for that one....Chris called the pharmacy and they sent us a new pump with new lines...and a nice new bag to carry all the portable things in.....we threw everything else out!!!!!
Needless to say...we feel we should never leave the house again!
Just an update with Hunter's medical side...his weight is up to 9lbs 13oz, his billi's are down again and his other liver levels are finally coming down. He did not have a bacterial infection and he continues to do well....
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, June 13, 2009
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