Jeremy’s
favorite phrase of words have become my life, think I’m officially name my life
a roller coaster while hanging upside down.
We had our yearly review for nursing, nothing exciting or so I thought it
was just his yearly review, nothing has changed for him but our new caseworker
wants to cut Jeremy’s nursing, from 12 hours 7 days a week to 8 hours 5 days a
week for 60 days and then nothing. The
caseworker called me on January 30 to tell me this, I was waiting for my car to
get finished and I argued with her, pleaded with her, cried for her and finally
a no-brainer filed an appeal. I think
she just overlooked so much into Jeremy’s care.
I am waiting on our court date and gathering my data.
Then the
very next day, Jeremy crashed and he crashed hard. I had went to my uncle’s funeral and on the way home
received a phone call from my home nurse that Jeremy was vomiting, running
fever, chilling. We did a urinary
culture to check the obvious, Cyrus started an antibiotic that Friday but Jeremy was so sick through the weekend, he finally got off the bed on
Sunday. The week before he had a seizure
in the bathtub, and the nurse had to lift him out and it took him over 45
minutes to regain his mobility. Jeremy
stayed home most that week because he was so tired, and he was really starting
to scare me. We went to see Cyrus the
next Friday, he did some blood work, urine culture all came back good except
Jeremy’s thyroid was 4 times lower than what it should be so that would
attribute to him being so tired. He got
better and then by Sunday he was back to running a fever, vomiting, a repeat of
the week before but Cyrus felt that was viral.
We did a Kidney US and it showed his left kidney is obviously smaller
than the right, so. We know with FG
syndrome they can have kidney issues, but Jeremy hasn't, but we just started
checking his kidney’s due to bladder issues, so it could be that his left is genetically smaller than the right, the spine curves in that direction could be preventing growth. Jeremy’s thyroid came down very easily, his urine culture continues to
look good and he’s improving with energy.
We will be doing a Uro-dynamics study to check bladder and go from
there. We had an appointment with our
Neurologist and he agrees that some of the issues we saw were along the line of
seizure activity so we will repeat the EEG. This was all in the month of February.
We have had cold winter, more snow, but it's not been too bad. We are expecting another round of cold, winter precipitation Sunday, Monday and Tuesday.....
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