Gwynn got out of the hospital last Wednesday after receiving another infusion on Tuesday, we went home to "wait it out" to see if she would feel better. She continued to complain about back pain and we saw Dr. Otto on Friday to make sure her infection had resolved(it had), Monday she woke up at 4:30am in incredible pain. I gave her some pain medication and she tried to go back to sleep. She did finally but woke up crying about an hour later and we couldn't get her comfortable. Monday afternoon we came back to the hospital and she was admitted. Her liver enzymes were high and so was her CRP indicating some type of inflammation, they think probably a virus. Her liver enzymes are now coming down and so is her CRP. She is still having incredible pain in her back and is pretty miserable. She is also really frustrated because although we have ruled many things out we haven't found the source of the pain. There are several possibilities. One is that it is related to her vasculitis. The next is that there is some type of change to her vertebrate similar to the changes in her elbows and femur(avascular necrosis), The CT didn't show anything obvious but the radiologist discussed with the hospitalist and if the pain continues they think we should get an MRI to look at the bones. They said her bones look less dense on CT according to the radiologist then they should. The other possibility which is my LEAST favorite right now, is that the Orencia may be causing the symptoms, apparently back pain and headache are both listed as possible causes. I really hope that is not the case because this medication has been such a miracle for her. Other than the last couple weeks she has been doing so well and it scares me to think what will happen if we loose this medication. She can't handle steroids anymore. They have destroyed her body and I am really afraid about the effects that any further steroid use will have given all the avascular necrosis she has had, and other scary side effects. We are going home today without a magic answer, I am getting used to it but it is seriously frustrating. I know that medicine is not as magical as I used to think it was and a lot of times it is a process...unfortunately a process that doesn't do any favors to the patient. It makes me crazy to see Gwynn in so much pain and not be able to do anything to help her. I know that sometimes it takes time for the issue to declare itself enough for the doctors to find the right issue.
As if the last couple weeks haven't been rough enough I took little Kilian into urgent care this morning for high fever etc and he has influenza so we are starting both Gwynn and Kilian on tamiflu...her preventatively because she would probably not handle it to well with everything she is going through right now. Kilian looks terrible. I am excited to not have to have one in the hospital and one terribly sick and home and have to choose who to be with. Hoping for a quiet weekend at the Larson Household. Guess I probably shouldn't hold my breath.
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