Prior to tonight I would have told you to disregard my last blog.
However I have said multiple times the more things change the more the
stay the same!
I am beyond frustrated with the U of M and Verizon.
I was told by Dr. Berg to disregard the previous report from
neurology late Monday night. He then became our attending doctor.
Tracy also finished up a lengthy dose of IVIG early Tuesday morning.
Tuesday if you remember I had a dentist appointment back in Troy and
because of the late IVIG Dose I only got a couple of hours of Tracy being
awake. She seemed to be doing well and I
was able to spend another 3 or 4 hours with her after I got back.
Wednesday day was an awesome day.
Tracy stood in a machine with occupational and physical therapy for 20
minutes! Praise God! However immediately after the therapy she
slept until about 6PM. This was another
answer to prayer as I spent 4-5 hours between the IRS and Huntington Bank,
trying to make a payroll tax payment that was due the 21st. Finally about 4:45PM I got the wire to go
through. It should not have been that
difficult!
About 8:30 last night I got to spend about an hour and half in
conversations with Tracy! She even told
me our home address and talked about cities nearby.
I was in Heaven and praising God!
Yesterday we also finally got her Ativan lowered to 3mg per day, one every
8 hours. Another Amen! Dr. Berg finally was able to talk to Mayo on
Wednesday also. They recommended
that we add a second treatment to Trace’s current treatment. They gave a couple of suggestions but would
not make an exact recommendation as Tracy is not there patient.
I hadn’t eaten since about 2PM, so I walked over to Jimmy John’s for a sandwich and some exercise about 11PM. It was so nice out
I wore shorts and polo, another thing to be thankful for.
Thursday started kind of slow as Tracy I think was getting use to
her lowered Ativan. When I arrived about
9:30AM they were getting ready to the same PT treatment as the day
before. However Tracy was not as
cooperative. We believe this was also due to
the lowered Ativan. They had Tracy sit
up in bed for approximately 20-30 minutes and picking up objects and giving
them to the therapists. Again Tracy was
exhausted, and went to quickly to sleep.
This afternoon there was a lymphoma meeting with one of the
leading Neuro-lymphoma specialists in the world and about 6:30PM I had two hematology
doctors telling me that it was a very good and productive meeting and that there
were 15-20 doctors attending. It was
decided that the best treatment for Trace would be to continue the IVIG, which
we had figured, and start another Rituxan treatment. As they felt that it had nothing to do with
Tracy condition back home. The asked me
to give them the ok to start the new treatment Friday. They told me that Dr. Berg was on board and
they were surprised that he hadn’t been by.
A little after 8PM I called from the hotel and I gave them the ok
to start the Rituxan treatment Friday.
It was about this time that I started getting chills and crawled
into bed. Tracy was asleep when I left
and left instructions to call me if she woke up as do not like to leave her
alone when she is awake. Remember, “it’s
boring here, I am bored.” I slept off
and on until about 9:45, when I woke up called to see how she was doing. I was put on hold for 20 minutes, I don’t
understand why someone couldn’t say, tell him I will call him back or tell him
to call in 10 minutes. So I bundled up,
checked my cell phone, only to see that it was not working correctly and
rebooted it. When it came back on there
was an email from Dr. Berg from 8:18 telling me basically everything the other
doctors had said but that he would talk to me in the morning about proceeding
with Tracy’s treatment leading me to believe that he did not want to start
treatment tomorrow. Confused and
spitting mad at Verizon as this phone has not worked consistently since I got
it and they have been trying to rectify it.
If you don’t have to use Verizon don’t.
They admitted to me tonight after 4 or 5 calls to them that there are
some problems with the Samsung Galaxy. Just like the Droid Razor they sold me in
November and replaced with this one!
As I got off the elevator at the hospital to see how Trace was
doing was when I finally got the email mentioned above. I read it as walked to her room becoming more
frustrated with every step. When I
reached Tracy’s room the nurse was there to tell me she just tried to call me and
that Trace was fine had been sleeping but just woke up. I masked up and went in told her that I loved
her and that I would be back.
Bottom line is, I do not know if Tracy will be receiving a
treatment tomorrow or not, as I approved it but there is no order for it.
I am feeling better now, the chills are gone and I have a backache
and a headache.
Please pray for the doctors, as I am so confused as to what is
going on and no one is here to answer my questions. Also, pray for Tracy as she continues to
improve and for her impending treatments.
God Bless and “Never Give Up… Never Ever Give Up!”
Rob
ps. I will proofread this later it’s late and I’m headed to bed.
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