Yesterday Hunter had his port taken out.....the surgeon said the infection on top of the port under the skin was "ugly"...there was no way the antibiotics would be able to kill the infection...his peripheral IV kept occluding so while he was out in surgery they removed it and put a new peripheral IV in his belly....sounds worse than it is but it laid flat with his body.....
Hunter went into recovery and at 1830hrs we were going to head back to his room...the floor where his room is called the recovery room and said we could not come back up because the room was not clean....this seemed odd since we were only out of the room for 2hrs! We found out that someone was being admitted into Hunter's room and he was being moved to a different room....the room Hunter was being moved to had someone in it still!! We were a little pissed to say the least since the poor kid just got out of surgery and wanted to sleep....we stayed in recovery until 2100hrs! Brutal.....once back on the floor and in a new room....the nurse came in and told us that the new IV could not have his TPN go through it because it was in his belly!!! WHAT!!!!! Hunter has probably lost almost 1lb since Monday....alot for his little body....and now we can't even run any TPN!!! We were pretty upset.....
When I got to the hospital this morning I spoke with Hunter's doctor....he said he was booking Hunter for a PIC line ( I guess it could be explained as being a temporary central line). He said if radiology could do it today we could go home on antibiotics tomorrow!!!! I was shocked...I thought we were in hospital for another couple of weeks. The way the last three weeks have gone we are not counting our chickens........
Hunter is booked for the PIC line tomorrow...he is put "on-call" starting at 1300hrs so they could call him anytime after that....then he can start getting his full nutrition again!!!
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.
Thursday, December 9, 2010
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