Update: Sitting here looking at my little man sleeping on the fold out couch I call my bed. He has one peripheral IV in his left hand and a new PICC line in his right arm. The PIV will be pulled tomorrow. He has been poked a minimum of once/day for blood draws for a couple of weeks now. They have had a hard time finding his veins, even when trying to locate them with ultrasound. Those they did find had scar tissue from being utilized. His doctor is not excited about having the extra tubing in him because he in currently fighting VRE. We are still waiting for the MSCs for his last three doses. They were moved to the NYC blood bank and there is an issue with the contract, so he hasnt had access to them in three weeks. Monday, he had a colonoscopy and endoscopy to try to find out what is going on with his gastrointestinal tract. They found lots of inflammation and took biopsies that started growing today...VRE. He had some crazy stuff showing up in his stool that we thought was shredded intestinal lining from the GVHD healing. Instead, it turns out that it is solidified pus from the bacterial infection in his intestines. The good news is the GVHD looks so much better. The bad news is we have a bigger problem in his fight with the VRE. VRE is a bacterial infection that cant be fought with the typical antibiotics and is resistant to Vancomycin. It is resistant to ALL antibiotics that they have tried to attack it with. The most recent one, Tigecycline, theyve actually gone up substantially on and tomorrow they are looking to add two more big dogs, Daptomycin and Ceftaroline. This is all they have to throw at this thing. We have run out of antibiotics. There is nothing else. So, they are trying to think outside the box for other options...a plan B and plan C. No one has ever seen anything like this before and I really wish it wasnt my son who has to present something unusual...I wish he was the status quo. His doctor is quite worried...very perplexed. This is very scary and unfortunately, not good news. If you have any questions about anything I posted, please do not hesitate to ask. A lot of the information is medical jargon and is put out there for educational purposes only. Continued prayers, thoughts, juju...
Posted on: Fri, 07 Nov 2014 03:37:25 +0000
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