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Location: Blogs The cure4treebeard Blog |
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| Posted by: Daddy |
2/21/2008 8:11 PM |
Thanks to all of you who have signed the guestbook and sent emails and let us know in other ways that you’re thinking of us. As Jacob always says, we’re “getting through it.”
It’s been a week of mixed news. Good news first: the doctors currently believe that the blood culture indicating an infection was a “false positive.” The type of bacteria that grew out commonly exists on the surface of skin and the new hypothesis is that the original sample was contaminated at some point. All cultures taken in Cincinnati have been negative for bacteria. This is an answer to prayer and after several days of IV antibiotics, they actually discharged JT late this afternoon for a three-day weekend. He and Jodi will arrive home late tonight and our family will be together over the weekend before he heads back on Monday for scopes, surgery, and more infusions.
Now the not-so-great news. The GVHD is really serious business and in order to get it under control they’ve begun to wipe out his new immune system. He received two infusions today that started to take out his T-cells and B-cells and they keep putting the steroids to him as well. It’s a sad thing to see all of the progress he’s made over the last 6 months to a year be reduced to rubble. He’s now ultra-susceptible to infection again. And so he’s back on the daily buffet of strong medicines: antibiotic, antiviral, antifungal, atypical prophylaxis, and a couple more. Back to wearing a special N-95 green mask whenever he leaves the house; Dr. Filipovich told Jodi that the flu virus can be airborne even in the cold air outside and we’ve got to keep him protected.
On Monday they’ll return to Cincinnati. Tuesday morning he’ll get scoped from both ends again as they look for GVHV of the gut. Our earnest prayer is that they see nothing and are able to put in the G-tube. Of course we’re concerned that all heals well around the G-tube, especially now.
They don’t have the light therapy machine up and running but when they do, that’s the next step – surgery to remove the port and put in another central line and then the therapy itself. And from what Jodi has heard it is pretty intense business. All the same, I think it holds the best hope for healing some of the damage wrought by the GVHD.
So there’s no shortage of things to pray for. First, thanksgiving for no infection and the weekend together. And then the rest of it. Thank you for being on our team.
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| Copyright ©2008 Brian Brown |
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Raise money for the National Foundation for Ectodermal Dysplasias simply by clicking your mouse! GoodSearch.com (powered by yahoo.com) is donating money to charities for use of their search engine. To use it, install the GoodSearch toolbar to the top of your browser screen and then type in the charity (National Foundation for Ectodermal Dysplasias) and then search as you would on Google.com or Yahoo.com. The NFED gets a monetary donation for every search! The more folks that know about this, the greater the donation to NFED, and hence the more money there is to fund research on Jacob's condition and others like his. Thank you!
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