Saturday, December 31, 2016

Who's the guide of your journey !!!!!!

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”!!!!!!!!