Last Tuesday I removed Hunter's port needle to do his weekly change....it looked red and the longer I kept the needle out the more the site swelled. I brought him into the day unit at the hospital and they said he definitely has a site infection so we will be admitting him. They took blood cultures from his line and he grew a gram rod negative infection. So this meant he had a site infection plus a line infection. The odd thing is that Hunter has had two previous line infections within the first year of his life...and he became very sick, fever, lethargic, he would look just terrible. But not this time around. You would never know he was sick...docs thought maybe the culture became contaminated somehow but the chances of a gram negative infection having a false positive is minimal. We were in hospital for four days which is long enough...they kept us to see what the sensitivities of the infection were meaning they wanted to see exactly which antibiotics he should be on to be most effective. The most effective one of course, was not covered for home use...only $60/day!!!! So they sent us home another one that is covered and they said it should do the trick...lets keep our fingers crossed...
I don't know why it is but it seems whenever something is going to happen with Hunter it is usually around his bed time.....last night he was jumping in his crib and he must have been too close to the rail and when he was on the "up jump" he pinched his skin between the railing and the port and bent the port needle...it swelled the size of half a golf ball....we of course had to take the needle out because it would not longer infuse his TPN. It was so painful for him...Chris tried twice to get the needle in and could not get good blood return meaning it was not sitting in the right spot...I really think he had it in the right place but it was so swollen it was not reaching the back of the port. We paged his awesome doctor and he said to put pressure on the swelling to get the blood out of the area and try to insert the needle again....if it does not work we would have to bring him to the hospital...we massaged that thing for 45 minutes and then Chris got the new needle to work....stressful on everyone involved let me tell ya.....hearing your child scream in pain because of something you have to do to him for his survival is not an easy thing to get used to....but we work on it :))
This morning the swelling was down some but the area is still pretty red....Hunter is his usual happy self....he is a trooper...he amazes me!
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, November 22, 2010
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