Friday, June 10, 2016

When you don't move that mountain !!!!!!

I have been thinking about needing to update the blog, I will work on it, it’s not right, change it, sometimes delete it all together and start over.  I pray about what I post and wait for GOD’s inspiration, sometimes it takes months to get a blog post.  I do this because my long term goal is to write a book. 

Where did I get the title, one of my favorite songs from Lauren Daigle, “I will trust in you”.  It’s also means so much to me as this is a season in my life of GOD teaching me.  When I hear this song I am normally singing it at the top of my lungs, why because I believe with everything in me...

We started the year out in a whirlwind so I will summarize because we did see our entire team of specialist in the first two months of the year:

  Pulmonary  - Jeremy’s pulmonary hypertension a concern, let’s do another echocardiogram to see where we are at, the future is possible sleep study to fit for a bi-pap and some point medicine.  

Cardiology – actually echocardiogram looked good & pulmonary hypertension is holding stable with last year so we will repeat the echocardiogram in a year. 

Neurosurgery – I really thought he was going to end up with another shunt surgery, but shunt series & CT all looked good, ventricles are smaller in size and shunt tubing is in place, we follow up in a year. 

Urology- he was having one UTI after another, he would finish an antibiotic and 3-4 days later he was having symptoms so we increased Gent solution to every night, so far that is working with no antibiotics since March. 

Orthopedic – one of the X-rays mentioned that his hips looked to be out of place but Dr. Dan did several X-rays, and hips were not out of place, always a heart wrenching appointment since his spine is progressing.

ENT- he was able to check out his ear & canals on the previous CT we did in January and his ears were all cleared which was good news because the CT was taken the day Jeremy was in lot of pain.   

Dentist – his teeth looked good none looked to be infected on an X-ray

Pediatricians – Cyrus, Phung & Siswasto (yes we seen them all) Jeremy fell at school gashed his head open, Cyrus put him back together with staples in his head, Siswasto removed them.  Phung ordered test on a Sunday because the night before Jeremy kept having desaturations and we found Jeremy to have a high white blood count, RSV, (RSV? He never even got as a small child).   

Neurologist – actually we are doing well in this department.   

 I was fortunate and got to attend the American College of Medical Genetics conference in Tampa, Florida, being part of the National Center of Collaborative and represent our Heartland Genetics as an advocate with another lady from Tulsa area.  We flew out of Tulsa on March 8 and came back on March 12.  I had a great time, met many new advocates, made new connections.  I got to meet up with a friend who retired from OG&E, we had dinner one evening, took a dolphin tour.    I left there with a renewal that we need to get back to find  a diagnose for Jeremy. 

Jeremy completed 10th grade on May 12, he’s had a slow summer and leaves for Camp Barnabas next week, excited for him to attend again although he keeps telling me no.  Mulley the cat he has aggravated for days, she keeps looking at me like really? 

I started in April trying to get our nursing agency to fill Jeremy’s open shifts and he was soon to get out of school and our primary nurse going on vacation for 3 weeks the end of May.  I was told, due to the “proposed” 25% provider cuts they weren’t hiring any new shifts so if a nurse was looking for hours that is how it would be filled.  I started advocating by writing letters, calling my state elected officials, praying GOD, move those mountains, I can’t do this.  I finally seen I needed to adjust my attitude and settled myself down, went to battle and was going to do it with joy in my heart because GOD was whom I had my trust in.  We were on our 3rd week of reduced nursing shifts.  I was thankful that my one nurse was able to work several reduced shifts to help us out, then our HTS worked as many hours as she could to fill some gaps.  I had friends, family who offered to help.  On top of being exhausted, I’ve been battling rules & regulations, jumping through hoops to get the money moved on Jeremy’s waiver to hire an additional HTS and on Thursday, June 9, an email was the straw that broke the camel’s back.  I sit at my desk at work almost in tears, I started talking to GOD and asked, “how long do I keep fighting?   because I’m tired just give me strength”.   I made my mind up I wasn’t giving up and was marching forward.  That next minute I receive an email from my nursing agency that our nurse is back from vacation and wants to work Friday & Saturday, I had tears well up in my eyes and such awe and  the fact that GOD already seen this day, he was working everything out for his good.  I am his child, he hears every prayer, he sees every tear, he sees every exhausting moment and my GOD is bigger than everything. 

Letting go of every single dream I lay each one down at your feet, every moment of my wondering, Never changes what you see, I try to win this war I confess, my hands are weary, I need your rest Mighty Warrior, king of the fight No matter what I face you're by my side.

When you don't move the mountains I'm needing you to move When you don't part the waters I wish I could walk through, When you don't give the answers as I cry out to you, I will trust, I will trust, I will trust in you.  

Truth is you know what tomorrow brings, There's not a day ahead you have not seen,
So let all things be my life and breath, I want what you want Lord and nothing less. 
When you don't part the waters I wish I could walk through, When you don't give the answers as I cry out to you, I will trust, I will trust, I will trust in you.

You are my strength and comfort, you are my steady hand, you are my firm foundation,
the rock on which I stand, your ways are always higher, your plans are always good, there's not a place where I'll go you've not already stood.