The doctors told me today that GVH of the gut (as they call it) takes a long time to treat, as in several weeks. Tim will not be on solid food for at least a week. When his GVH symptoms have calmed down, they will gradually introduce solid food again. This new medication, Rituxan, is a once a week IV medication. One of the nurses told me that it can take several doses before you begin to see results.
The social worker is trying to arrange for a more intensive therapy for Tim than is available outpatient through our insurance. He can barely walk anymore and will need extensive therapy to return to a more normal level of mobility.
As if that weren't enough, his mental status has declined again. He slept almost all day, which is not a good sign. He is getting another MRI tonight to check on the vasculitis. I hope that we will hear from the neurologist tomorrow. If we're lucky, the vasculitis will not look worse and the neurologist will attribute his mental status to the problem of stabilizing his electrolyte/hormone/endocrine levels from the GVH. I dread to think what unlucky could be.
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2 comments:
Jennifer, It's probably a drain for you to have to update this, but I greatly appreciate it. Please know that we keep regular tabs and are praying for you and Tim and the boys. Ginny
Jennifer,
I have been away from your blog site for a while and now as I catch up I can see that Tim's condition continues to take a difficult path.
You and Tim are suffering well and that is a very noble thing to do. I admire the courage and thoughtfulness that you continue to show through this trial.
I'm only a cell phone call away if you'd like to talk through some of those tough late nights. I almost never sleep so consider me on call.
Love you,
Craig
319.759.1797
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