Sunday, June 21, 2009

Father's Day At The Inn

We are still impatient in Milwaukee, Sam's line placement surgery is scheduled for tomorrow. We are still hoping for a Monday discharge, but Tuesday is looking more likely. Sam is doing very well and his old site is looking better every day. We will be continuing IV antibiotics at home just to make sure we get rid of this infection. The infection on Sam's chest and around his tunneled line was identified as Staph. Cultures from his blood still have no growth so it still looks as though we avoided an infection in his bloodstream. He is obviously feeling great and although we try to keep him busy throughout the day he is still sick of being here. Having one arm disabled (to help secure a temporary IV in his hand until we have his new line placed) limits what he can do as crawling and walking are both out. Our attempt at letting him walk without one had for support ended with a nice bruise on his forehead.

From time to time we are contacted by parents of other children who are sick through our website. Some of them found our site by chance and want to know more about how to get Omegaven. Over the last year I have fielded quite a few of these emails and explain what we have gone through to get Omegaven. In every case so far, none of these parents has made it out to Boston or been able to get Omegaven at home. Most of the time I do not hear from these parents for a long time and then I get an email explaining that their child has passed away or their health is failing and death seems imminent. Another parent had opted for a transplant and their child passed away due to complications of the transplant. Getting these messages has been very hard to handle, so much so that I have often thought about not responding to the inquiries any more. But there is always the thought in the back of my mind that one of these times it may make the difference between life and death for someone, so I continue to respond and offer any help that I can.

Three weeks ago we receive an email from a woman who's son was being treated at Children's Hopsital of Wisconsin - Milwaukee. Her son is seven months old and was showing all the symptoms of having Microvillus Inclusion Disease. A biopsy showed that her son has plenty of villi, they are just shorter than normal. At the point that she contacted us she was extremely frustrated. Her son had started showing signs of TPN Associated Liver Disease a few months ago. She heard many of the same things we did when we were in Milwaukee about a transplant, short life span, etc... She was told that her son would need a liver transplant with a few months.

Someone at the hospital who was familiar with Sam told her that she should visit our website. I am happy to report that her son started receiving Omegaven at Children's Hospital Boston at the end of this past week. Being able to help this one child get to where there was hope and help has made all of those heartbreaking moments almost worthwhile. Just knowing that Sam's site possibly helped to save the life of one other child and helped to spread the word about Omegaven means that others out there will find our site, or others like it, and find hope when they are being handed a lot of gloom and doom.

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