Monday, April 28, 2014

Houston or bust!

We have been in full on survival mode. Our persistent circumstances have kept us on our toes. The extended lows have really been an adjustment. Honestly, the Macs can roll with the punches with the best of em...but no lie, these past 3 months have been tough stuff.
Justin went in and out of the hospital through January and February and March with little to NO answers. Doctors didn't know what was happening so they just passed him along. Our PCP (and his team) and my little ol gut told me to keep fighting. There was an urgency that we haven't felt before and it was overwhelmingly discouraging to not have hospitalists with the same passion for Justin. I felt like I was chasing a leprechaun at the end of a rainbow. Or a hamster in one of those hamster things. Working with all my might, but getting NOWHERE. Without the encouragement of our PCP team, I may have given up. I may have thrown in the towel. Really, I was so close to done. Done fighting and yelling and making a scene before a hospital doctor would hear me. Begging for someone to care and look harder. Advocating for a person that only has 50% mental status but doesn't realize that is a really hard job. My instruction manual apparently got lost in the mail. Apparently that happens sometimes in Boerne.
As my hands were on the way up in the air to say I GIVE UP, God would show up and remind me that I WILL NOT FIGHT THIS BATTLE ALONE. He will not leave me nor forsake me and he will equip me with a love that can ONLY be attributed to him. He provides beyond our wildest expectations. We will never stop being amazed at the lengths God goes to so that we can feel refreshed and revitalized and confident that His love for Justin is far greater than our wildest imagination.
With the VERY hard work and persistence of an incredible doctor...we got to where we needed to be. Justin was admitted to University Hospital. Getting in was nothing short of a miracle and after a lot of waiting a plan is now in progress. The infection Justin has been dealing with was revealed...the thing we KNEW was wreaking havoc on him was finally brought to light. God planted a spirit of determination. The glory goes to our Father and to Him alone.
He was then referred to a specialist in Houston. I have read her book and many blogs on her work, but she has a two year waiting list and has always seemed unattainable. We spent so much time in Cleveland and exploring another out of town doctor just never felt right. Plus, a two year waiting list. Um, no thanks. We were given an appt for JULY, which was to be considered as a pretty big favor.
HOWEVER...God tells us to seek and you will find. Out of nowhere, we received a call that "something came up" and we can come in to see this world renowned systemic sclerosis specialist on May 6th. Which, is NEXT week. Hello. Yes to that.
What does that appointment hold? Who knows. But, Gods sovereign hand does not relent.
We specifically need you to pray that the viral infection in his body gets right on outta town. His immune system counts have NOT come up. We so badly need these numbers to rise. When he has a good day he wants to do things that make him feel normal. He wants to go to my cousins wedding this weekend, go  to the movies, sit with us at church. But, the risk is just too high right now. We will NOT live in fear of germs...but we also want to give this Houston appointment our very best shot and he needs to be as germ free as he can be for that appt. Thank you for your encouragement to update. We need you all to intercede daily. We can't wait to shout from the rooftops the mighty work that God has done in Justin's heart. There has been a revival in his heart and that trumps any diagnosis, doctor or medication on this earth. We have already been given an eternal gift and His reminder of that is just too good for any words that I could ever come up with.

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