Friday, January 9, 2009

We’re back in St Louis today. We scheduled this visit last December with Dr. Vij to discuss the allogeneic stem cell transplant. Hopefully today we will find out whether Tom or Skibby (or both!) are a match. If not, we would have to look for an unrelated donor. But, I’ll know more about that later. I figured I’d take this opportunity to update everyone on what happened earlier this week.


Loyal readers will recall that Greg got pneumonia (or "ramonia") in November. He started with fever, and he spent about 4 days in the hospital in Springfield before they transfereed him to Barnes in St. Louis because (we suspect), they didn’t know what to do with him.


Anyway, this past Monday night, about 6 p.m., Greg comes downstairs where Matthew and I were, wearing his coat, hat, gloves & boots. I said, "Where in the world are you going?" "No where. I’m freezing!" Great. Here we go again. Of course, I have about 3,000 fever thermometers in the house, and couldn’t find one. After tearing apart all the bathrooms, I finally find one. He’s at 101.2. I’m supposed to call the doctor if he’s 101 or greater. We decide to monitor for a while, and by 8:30 he’s up to 102. Remembering what happened last time with St. John’s, I called Barnes directly. Five minutes later the BMT Fellow on call calls back & tells me what I already know: they want him there (a 200 mile trip). Sigh. Here we go. We make child care arrangements (Huge Thanks to the Wherleys!), wait for Eric to get home from hockey practice, and pack a bag. We got on the road at about 10:00.


The good news is, there’s not much traffic between here and St. Louis at that time of night, and I was driving, so we got there in record time. We didn’t have to go through the ER, and went directly to the floor, so we were in his room by 2 a.m. The nurse did all the preliminary stuff, and we saw the doctor at 3:30 a.m. The chest X-ray was at 4, and the antibiotics started flowing at 4:30. Good thing he didn’t need any rest! They have a wonderful system there that ensures the IV pump will start beeping (loudly!) just as soon as you begin to nod off. Works like a charm!


Greg had taken a Tylenol prior to leaving the house, as we didn’t want to drive with him in that condition. So, his fever had pretty well abated by the time we got to the hospital, and because they started the antibiotics so quickly, never returned with the intensity he had at home. They spent Tuesday running tests, & cultures, which were all negative (although that’s not uncommon). They never did find out what the culprit was.


As usual, we got conflicting info from each doctor we spoke with. But we talked them into letting him come home on oral antibiotics on Wednesday. They told him he could go home in the morning, but he needed one last dose of each IV antibiotic and platelets (he was at 17!) before we could leave. So, naturally, we got on the road about 5:15. Nothing like rush hour in St. Louis.


Oh, and now, because he’s had so many transfusions, he’s developed antibodies to the blood products. I’m not sure I fully understand it, but basically, if he gets blood containing the certain "bodies" his "antibodies" will eat them up or attack them, causing a reaction. So, now each blood product has to be precreened to make sure he doesn’t receive the ones he attacks. This narrows the pool of blood products he can get, and I guess it narrows more each time he gets a transfusion.


That’s about all for now. Later today, while Greg is getting his biopsy, I’ll try to blog about our meeting with Dr. Vij. Until then, lets all keep our fingers crossed for good news!


Love,
Greg & Ann