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.

Monday, April 14, 2014

moments with Jesus

So, JMac took a turn for the worst. We have been doing our best to manage his health with home health over the past few weeks. It has just become more dangerous for him to be in and out of hospitals and doctors offices than it is worth. And honestly, the doctors he has seen at the hospitals in San Antonio just don't know what to do with him. There have been lots of decisions and unknowns going on around here lately. Should we go back to Cleveland? Should we see a new specialist in Houston? Should he do IVIG? Should he leave the house at all?
Our family doctor has been on the case. He and his team communicate with us almost daily. Saturday night I noticed some things were off and different with Justin. I have to check myself now and again to make sure I am not overreacting (I know, me overreacting is practically unimaginable) I called in a second set of eyes. We went with my gut and had him checked out. What was found can NOT be treated at home so sometime today he will be admitted to University Hospital. He needs to be followed by his pulmonologist (Dr. N) and seen by a GI specialist... Dr. N is at University and they will have the most advanced info for a patient like J. Our plan was to keep him OUT of the hospital. It is too hard on him. It is too frustrating to deal with new doctors every day. It is really just too hard on our family. But, we trust our PCP and this is what he strongly suggests.
There are lots of additional details here that I am just not ready to share. Too many unknowns and what ifs. What we do know is that while we wait for the call to head to the hospital and while I scramble to wrap my head around another week of that we have Jesus. It is just as simple as that. What happens at the hospital or with the doctors or in Justin's body is just really irrelevant. Jesus knit Justin together perfectly. He made no mistakes in creating him. Jesus will provide us with hope and peace and joy...even at the most unsuspecting times.
God revealed something BIG to me recently. Something really amazing.

He reminded me that laughter is a gift that he created for our souls. Go to your Bible App and look up laughter. It is good.

A joyful heart is good medicine.. Proverbs 17:22

I am not always in the mood for laughing these days. Sometimes the days are really long and hard and the nights are the same. There are many things happening around me on a daily basis that remind me how NOT normal our life is.
But laughter pops in just at the right time...Because sometimes you need to jump on the trampoline with your best friend. Or have an impromptu lunch with some girlfriends. Or dance with some nerds or talk about rhinos and HOA's. It is really good for the soul. I don't laugh as often as I would like these days, but God has saved some very special moments for me and I am pretty grateful for that. We are in awe of hard life can seem, but how precious the moments still are.
Those moments are from Jesus.