Who guides your journey?
Our year in re-cap and end of year thoughts and I’m going to
start this blog off with what it is, this was absolutely one of the craziest,
full of change years we’ve had, but I can also say with absolute certainty to GOD
be the glory. His mercies are new every
morning, he sustained us, gave me strength because without it I would not have
survived this year. We are stronger and
my relationship with GOD means more to me than ever.
We started January with the news that our Pediatrician, Dr. Scott
Cyrus, who has been our PCP for since birth was moving to New Mexico and that
rocked my world. I then found out my boss
was moving back to OKC and I would be getting a new boss. Jeremy then started having something going on,
he was having headaches, rubbing his eyes not sure but something was causing
him pain. We already had a follow up with
Neurosurgery from the December shunt revision, CT scan and shunt series X-ray
showed the shunt was working. Pulmonary repeated
the echo-cardiogram and his pulmonary hypertension was holding steadfast with
last year. A typical Wednesday day for
us, Jeremy goes to school, I go to work come out of a meeting with over 15
missed calls & texts to find out that Jeremy had fell back and gashed his
head open, luckily Cyrus was in the office that day, so he cleaned his head and
put in staples, it was a pretty big gash.
Then Jeremy started to get one UTI after another, he would finish a
round of antibiotics and 3-4 days later symptoms would arise, we started doing
a Gentamicin flush each night and he’s been UTI free. His eyes checked out good, his ears checked
out good, teeth checked out good. I had
applied and was awarded the grant to attend the American College of Medical
Genetics Conference as an advocate and it would be in Tampa Bay. I was so excited that I was chose to go from
Oklahoma with another advocate but there was a questions of if I would get to
attend up until the Friday before I left because something was going on with Jeremy. We ended up in doctor office that Monday with
strep throat, so he was on another antibiotic.
I did get to go, met wonderful new advocates, information was overwhelming
but motivating. I even got to visit with
a retired OGE friend who moved to Jacksonville, FL. I was reconnected with Jeremy’s past Geneticist,
Dr. Moggandam. We survived spring, had
some house issues, plenty of repairs were made.
Jeremy was starting to level out with his health. My home health nursing agency was not filling
all of Jeremy’s shifts so that made life crazy for us, when our primary nurse
was gone on vacation for 2 weeks. Jeremy
attended Camp Barnabas, had a GREAT time.
I got a new boss at work, as well as a few other job changes. My Agency got us another nurse and our shifts
were filled. We went to Columbia, Missouri
for a few days to see Dr. Dan and a few day mini-vacation. We were rocking summer and moving into fall. I got an opportunity to go to Omaha, NE for a
weekend for some awesome, mentoring training, and then attend the Heartland
Collaborative Conference in Little Rock for 3 days. I will say, this was a tease of calm, a calm
before the storm. I found out that my
home health agency was closing Tulsa office and we could transfer to OKC, so I
decided to transfer only to have the rug pulled out from underneath me as they
said, “OH sorry we aren’t taking Jeremy”.
We had one of nurses during this time to retire, which we were sad
because we’ve had her for over 4 years and she filled a day for us and then
filled in other times, but we understood she needed to care for her dad. I started to use my advocacy skills and let
my voice be heard about how wrong this was, how hurtful this was to the
clients, the children, my son. A new
agency was picked and we were settling in, with our faithful, beloved nurse who
followed us. We had been with them a
week, adjusting to new people when Jeremy’s knee swelled up. A trip to the ER visit which included a knee Ultrasound,
blood work, 1 dose of IV antibiotics and we were sent home on oral antibiotics. I just assumed this was the end of that, we
would do the antibiotics, I mean he’s had cellulitis before but a follow up
with our doctor office the next day lead to an admission by Dr. Phung (who is
in our doctor’s office and is AMAZING). We
stayed for 2 days and he responded so well to the IV antibiotics so we got to
come home the day before Thanksgiving. The
next week he finished his antibiotics and his knee was starting to look bad, I
had this feeling it was going to come back with a vengeance. A doctor appointment with Dr. Phung, blood
test, Ultrasound we were re-admitted for 7 days, that time included knee
surgery to clean out that knee and get rid of the infection, strong IV antibiotics. A time I didn’t realize I could be so
physically exhausted but it was only by the grace of GOD. We came home and had follow up blood test, doctor
appointments, more blood test until Jeremy’s
C-reactive protein level came down to normal.
There was a time that I was sure that we weren’t quit out of the woods
and would be readmitted for possible draining the knee or surgery. I’m honest when I say, I’m still not sure
that won’t be in our future, his knee is still puffy, it looks better but still
puffy.
Although it was a whirlwind year, we were blessed with help
from our friends, church, family who stood by our side and pitched in to help
when I needed. Dr. Phung is our newest
Super-hero and how he put into place a quick plan for Jeremy. I continue my work with Oklahoma Family
Network, my mission & my passion, plug along at OG&E with new boss, co-worker
in Sapulpa & Muskogee. Jeremy is
loving school and ready to return next week.
Mollie the “crazy” cat, is still the crazy cat who entertains us.
We will bring in the Year 2017, pretty much like any other
year in bed asleep.
I close this post with my new Motto and somehow I need to
figure out the way to get a book started on this journey. I just trust GOD for the doors to open if
that is his will but until then I continue to blog.
“I don’t trust the Journey, but I trust my GOD who
determines the journey”!!!!!!!!
