Still Riding the Roller Coaster

Annie has been in the hospital now for four weeks, and I guess that's long enough to warrant a room change!  She was moved to a new room just a couple doors down earlier this week.  The diseases control department at the hospital required her to move to a new room mostly to make sure that she doesn't re-infect herself with c-diff spores which were most likely lingering all over her old room.  They wanted to get that room cleaned up to reduce the risk of spreading c-diff to other patients as well.  Our new room is a little more private and tucked away, but has a much smaller window which wouldn't be a big deal, but after four weeks of cabin fever, it might start to bug me if we're here too much longer.

Annie had her scopes done on Wednesday and got her subclavian line replaced so it will start drawing blood and Annie won't have to endure any more pokes!  The GI came out after the procedure and said that her upper endoscopy all looked normal, and her sigmoidoscopy looked much better than he had anticipated with just small areas of redness and inflammation.  We breathed a huge sigh of relief!  He took biopsies from 4 different areas (esophagus, stomach, deodenum, and rectosigmoid) and said he'd have results on Friday.  We felt incredibly encouraged.  But then the roller coaster came to a new hill...

The nurse came into our room on Friday while she was on the phone with the GI, and asked me if Justin would be coming back to the hospital later that afternoon.  I told her he would be here at 2:00 and the GI confirmed that he would come then to talk to us.  Doctors don't just plan their schedules around yours and we've never had a doctor call in advance to make sure that both parents will be present when he comes...  We started imagining the worst. 

The ID team beat the GI doctor in to visit us by just about 10-20 minutes.  So first the ID team came in and said they aren't changing any of their treatment with the vancomycin and mentioned that the GI will be the one to manage all the inflammation that has expanded well beyond the colon, and that the GI will be in soon to talk to us about that!  I wondered if I had heard the ID doctor correctly about inflammation extending well beyond the colon but knew I just had to wait to learn more from the GI doctor. 

The GI finally came in and told us that even though the visual images from the scopes didn't show much inflammation (none on the upper endoscopy) the biopsy results showed evidence of chronic inflammation throughout her entire GI tract, except for her esophagus.  So her stomach, duodenum, down into her small intestines, her colon, and her sigmoid all have an incredible amount of inflammation.  He also told us that according to her blood work, the inflammation has only continued to worsen since she entered the hospital 4 weeks ago!  The biopsies showed an actual change in the cellular structure of the colon from such prolonged and intense inflammation. 

They know that c-diff could not have caused such severe inflammation in the other organs (other than the colon), so they now know that they need to figure out what the underlying issue is.  There is still a chance that the c-diff has caused all the inflammation in the colon and the inflammation in her duodenum and stomach could be due to GERD and the fact that she's been on so much motrin for all her fevers and pain (however, she has continually been on proton pump inhibitors that should have prevented inflammation from all that).  But we are still hoping that's all it is--a severe case of c-diff with GERD.  The other causes they are suspecting are irritable bowel disease (IBD), Crohn's disease, or a possible immunodeficiency problem.  They suspect that Annie has had problems for a long time, just without symptoms, and either the clindamycin last July or the c-diff was the trigger that made the problem develop further into what it is now.

So they immediately started Annie on prednisone to reduce the inflammation throughout her entire GI tract.  But they couldn't start prednisone until after she had blood work done to test for TB.  And of course, when they tried to draw it from her subclavian line, they couldn't get any blood!  They didn't want to wait for blood thinners to work out clots from her line, so they had to poke her arm to draw blood.  However, they then discovered that the blood tubes they were using were all expired, so they had to poke her arm yet again a second time!  I was so angry!  I don't know why they were in such a hurry and couldn't wait to get blood until her central line cleared!  (Which they did eventually get clear later that night.) 

We were a little nervous about starting Annie on steroids since there are so many bad side effects--blood pressure issues, suppression of her immune system, weight gain, sleep problems, etc.--but we know that the benefits will be worth it.  She'll remain on steroids for a month.  They expect to see an improvement in the inflammation (measured through blood work) within 4-5 days, and hope to have inflammation down enough within 3 weeks to be able to do a full colonoscopy in order to find out what her underlying issues are.  Once the steroids start bringing down the inflammation they suspect that her diarrhea will also start to improve and her issues with mal-absorption will start to decrease.


If you made it reading this far, you must be a true friend!  I should probably post shorter updates more frequently, but things have just been too busy lately.  Thanks to everyone who continues to show interest and concern for Annie.  We feel so blessed to have such supportive friends and family.  We'll be sad to see my parents leave next week, but we know we have so many other people who are so willing to help us out.  We appreciate you and are grateful for all your prayers on Annie's behalf.