MRI results and being terrified by remaining in limbo.....
This is a short post, as the energy is drained from both of us. Dr. Forman came over around 5:30 p.m. to tell us the results of this morning's MRI with anaesthesia. (By the way, they did the MRI planned for Friday this a.m. because the slot opened up when someone else cancelled. This MRI was of the brain, for the purpose of comparing it to the earlier MRIs of the brain.) Dr. told us that here has been no change since the beginning of all of the medicines for infections. It's no better and no worse. Just continued "limbo" as he said.
What this means is that we should wait longer to see if the medications make a difference. Meanwhile John is exhausted, has the same speech and balance symptoms, and has some stomach upsets, partly from the massive anti-infection medicines for brain and pneumonia. A summary of what we know are next steps:
-Lumbar puncture (spinal tap) tomorrow or Thursday to see if leukemia,TB, meningitis, or other evil things appear (we've had many of these to date--all negative)
-More medicines for pneumonia until they take another chest x-ray and see it clear
-More medicines for brain until they see resolution or see enhancement (therefore lack of resolution) of brain "lesions" (shadowy places)
-Being moved to rehabilitation floor for preparation for home health care and rehab
-Future appointments for future scans and lumbar punctures, and future treatments that could include risky brain surgery, radiation, and other treatments if anti-infection meds don't clear it
-Rehabilitation here and in Austin for speech, walking, and functioning as normally as possible
We are going to have to hire some people to help us at home, take John to a lot of therapies, and call on you Austin supporters to help us when we return anytime, we guess, between 3-7 days.
Right now we are feeling down, overwhelmed, and sorry for ourselves. I am feeling that John has already been through too much. And John feels that I have already been through too much. We are sure we will be more resourceful soon. John says he is already annoyed with himself for drawing the worst possible conclusions, because there is no reason for not drawing the best possible conclusions.
We can still feel your love and support for us and believe that all of the doctors are doing their very best for John.
Love, John and Anna
What this means is that we should wait longer to see if the medications make a difference. Meanwhile John is exhausted, has the same speech and balance symptoms, and has some stomach upsets, partly from the massive anti-infection medicines for brain and pneumonia. A summary of what we know are next steps:
-Lumbar puncture (spinal tap) tomorrow or Thursday to see if leukemia,TB, meningitis, or other evil things appear (we've had many of these to date--all negative)
-More medicines for pneumonia until they take another chest x-ray and see it clear
-More medicines for brain until they see resolution or see enhancement (therefore lack of resolution) of brain "lesions" (shadowy places)
-Being moved to rehabilitation floor for preparation for home health care and rehab
-Future appointments for future scans and lumbar punctures, and future treatments that could include risky brain surgery, radiation, and other treatments if anti-infection meds don't clear it
-Rehabilitation here and in Austin for speech, walking, and functioning as normally as possible
We are going to have to hire some people to help us at home, take John to a lot of therapies, and call on you Austin supporters to help us when we return anytime, we guess, between 3-7 days.
Right now we are feeling down, overwhelmed, and sorry for ourselves. I am feeling that John has already been through too much. And John feels that I have already been through too much. We are sure we will be more resourceful soon. John says he is already annoyed with himself for drawing the worst possible conclusions, because there is no reason for not drawing the best possible conclusions.
We can still feel your love and support for us and believe that all of the doctors are doing their very best for John.
Love, John and Anna
posted by anna at 6:20 PM
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