Hey Everybody,
Mandy has had a couple of rough days. She got up yesterday and did some of
her therapy before we took the transport to Mayo Clinic again. They scheduled
electrical studies that specifically evaluated her spinal column. (Today we found
out that those studies are normal.) Mandy did not feel well at all. I was worried
she wouldn't be able to tolerate the tests. But she was an absolute trouper and
got the tests done in record time. She got back to the unit and they tried to do
some of her remaining therapy but she was completely wiped out. She still tried
hard and was able to do some things but her therapist could see she wasn't up
for much. One of the things that concern me the most is that she is loosing her
trunk strength and can't always maintain her balance sitting up. We have had to
strap her into her chair while we have been at Mayo so she can sit up. Last night
she couldn't do anything at all to help get herself in bed. It's VERY discouraging.
Today Mandy was scheduled for a repeat MRI They couldn't give her a schedule
so she started therapy then they called her at 10:30. She was gone 2 1/2 hours.
Then a quick lunch and right back to therapy. Long day. The MRI results were
supposed to be sent to Mayo asap so on a hunch I went down to radiology to see
if they were on their way. They looked at me like I was crazy and said they don't
transfer records to Mayo. (Of course.) So I got copies of the disk and the reports
and ran them to Mayo myself. Dr. Carter called Mandy shortly after that which was amazing.
He gave her the news about the electrical studies (normal) and told her he hasn't been able
to get the specifics on the MS Panel. He needs the EXACT number of bands and he's
looking at a specific kind of band. All we have been able to get is a report that says there
are "bands present." After multiple calls I FINALLY got the name of the lab and the doctor can call
the lab directly. If they didn't do the complete panel, the spinal tap will have to be repeated.
The sample would be too old now. I will be SO ANGRY if that is true! The spinal tap
has been (according to Mandy) the worst part of this entire experience! And that's saying
a lot!!! We're still waiting on the blood tests. As far as the MRI, Dr. Carter hadn't looked at the
radiologists report but looking at the MRI himself, he said it was what he would expect to
be seeing an MS lesion to be doing with high steroid therapy. It hasn't changed much. The lack
of response to steroids also decreases the likelihood that it's cancer. And Dr. Carter is not pushing
to do a biopsy at this point. However nothing still explains her level of disability. We don't have all
the info yet. What else is new?
Mandy is completely exhausted and went to bed early tonight. These days have been really
tough on her. They're already planning her discharge. When they told me that yesterday I
about lost it! She's losing ground and they're sending her home?? What's wrong with this
picture? After a re-evaluation they extended her projected discharge date to the 22nd. We
have been measuring doorways and counter heights etc., to figure out how we can accommodate
a wheelchair at home. That's the least of our worries.
Thank you for the continued prayers and loving support.
Tami
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