It seems the only time I have to update Hunter's blog is when he is in the hospital! But first I need to update the last couple of months or so to catch you up to speed.
We have been dealing with a kidney issue which I think I posted about before...its been so long I really can't remember. Anyways, we have been going to appointments almost weekly and bringing urine samples which is always fun attempting to get. I have to say we are becoming quite good at it...it does help that we document all of Hunter's input and output and urine/stool so we pretty much know when he will go each day...the concern for the kidneys is the amount of calcification that has occurred which has damaged Hunter's kidneys. We were told his "urine is precipitating calcium". What does that mean?!! Exactly...I really don't understand it all but basically urine is supposed to grab hold of the calcium and be expelled. Hunter's urine is not grabbing hold and taking the calcium out of his body so his kidney's are working over time and can't keep up. At this point we don't know if the kidney's will repair themselves or not. We started Hunter on a new oral medication which we weren't sure would work since taking things orally doesn't always absorb properly into his system. Well it seems to be working.....thankfully and we will continue with our regular appointments and go again in about 6 months for another ultrasound to see if there is any visible change.
Which brings us up to speed for today....we went to his regular appointment and his TPN ran fine all morning. When we took him off at the appointment the nurse had difficulty getting blood withdrawal from the line. It eventually came but not like it should, then she couldn't flush the line, it was completely blocked. I suggested changing the cap hoping it was simply an issue with it....its wasn't....they wanted to use TPA in the line (the liquid draino type stuff) which they had put in a couple of weeks ago to clear a blockage...nothing was going in the line and it eventually popped. So we were admitted on the spot and his doctor came in and told us he recommended we put in a new line...the long awaited port-a-cath! Like I've said before...you don't want to put your child into surgery but I think it will really improve Hunter's life and shorten the hospital stays since we've been in the hospital due to a line break 4 times since Easter.... The port is under his skin so when we disconnect him he can swim and bath without worrying about getting the site wet.
We have also been in "fights" with our insurance company and one of the companies we get Hunter's supplies from....I don't understand how you can require the same supplies every week for months at a time and the company be so inconsistant in sending the proper supplies...I call them pretty much weekly to get it straightened out...its brutal! And to top it all off our own insurance company has not paid for anything required for Hunter since he's been home....they are useless....
We have started getting these "coily" lines similar to a telephone cord which we attach to Hunter's current line...this give him an extra 4-5 feet of freedom from being glued to our side when he is hooked up to his TPN...its been a god send......
Hunter is growing so much and walking everywhere...sometimes making attempts at runs but that doesn't always work out well!! hhaahah......Hunter was 21lbs 7oz today.....
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, June 14, 2010
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