Sunday, March 9, 2014

a very real update

So much to update.
The past week has been a complete whirl wind and I am glad it is over. Justin gave the doctors all a run for their money as they could not figure out what was causing him to have such trouble breathing and what was causing his mental status to be so wishy washy. I stood back in total exhaustion and frustration as the doctors checked EVERY nook and cranny of his internal organs and could not SEE anything new or different that would be causing these scary issues.
They sent him home on oxygen Saturday with the plan to follow up with a doctor at the university. He remembers SO little of the past 7 days, which is scary and weird to say the least. Home oxygen is loud (think a mini generator in your room) but, it got him home and in our bed and together with our family and that is WORTH it.

So here is the thing... I am about to get real honest.
This week I GAVE UP. I was over it. I wanted this all to be done.
I forgot about this:
7For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,18while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal. (2 Corinthians 4:18)

I decided that my MOMENTARY affliction was too hard. I was looking for something that we could SEE, when surely I know that faith is believing in what can NOT be seen. This week I put my hope in the hands of doctors and my fear in disease rather than hanging on to the HOLY hope that I know to be truth.

I decided that this fight had gotten too hard and too inconvenient. I just want to stay at home and be a mom and work and do normal people things. I want to make meals for hurting people, not be the one accepting them. I want to fight for the the injustices all around me and focus on the ways God has gifted me to serve. I wanted them to figure this all out and get Justin better or not, but I wanted an end result. Because... I am selfish.

God created Eve because Adam needed a helpmate. A LIFE partner. An advocate.
NOT because he needed a boss or a someone to just check the boxes when things got hard.

I want LIFE for my husband. There is only one place to find life and that is in the freedom of Jesus Christ. Life is not found in test results from doctors or answers from labs or university specialists. We have been there done that...and have been reminded every time that our God is greater and stronger and more mighty than every doctor on this earth put together. But, if Justin wants to change his mind and one day give up on meds and the next day he wants to see every specialist in America...then that is what we will do.

I am emotional as I realize that His grace is sufficient. I turned my back on Him and to the world this week and He stood there patiently waiting for me to GET A GRIP! God doesn't NEED me to fight for Justin. He doesn't NEED me to play with my kids everyday. He doesn't NEED me to be a part of any ministry. He is the vine and we are the branches...apart from Him we can do NOTHING. It isn't the other way around, and I had to check myself for real ya'll.

Justin did not say much that made sense this week...but he did say that HE WILL FIGHT TO GIVE GOD THE GLORY FOR EACH AND EVERY DAY HE HAS LEFT.
My rowdy, defiant, rule breaking, potty mouth, hilarious and handsome husband said that. If he can stand firm in that in his condition then the rest of us have NO excuse. None.

Monday, March 3, 2014

monday/mercy day

I am going to start this post off with some reflection of Lamentations 3:19-33
His mercy renews each day. His mercy and love and compassion for Justin (or me) will NOT run out no matter what the doctors say or how Justin feels. When we throw our hands up in defeat or bury our faces in blankets smeared with tears or even when we want to punch something in the throat...His mercy for us reigns. When affliction doesn't even seem like a harsh enough word...his mercy overcomes. When the future looks exhausting and we want to run away and hide...the Father has a stockpile of mercy just waiting for us to rest in. His resting place. His resting place which is prepared for each of us for such a time as this. Justin's resting place is with the Lord and mine is too...but our place's look so different. Only a mighty mighty God could prepare a place for each of us. Design it with grace, compassion and hope...fill it with love and call us by name to it. He is good.

Today's news from the hospital is: Not great. Not Terrible. Confusing.
Make sense? Of course not.

Here are the facts.
1. Justin's mental state has returned to about 95%! Praise. His feisty little attitude is back and his jokes make more sense now. As far as I know I have not made anymore appearances on the real housewives of atlanta ;)
2. The lab results we were awaiting showed that Justin has ZERO immune system. Literally. There are two numbers the Infectious Disease Dr was looking for. CD19 which deals with viral and CD4 which deals with bacterial. Both non existent. Basically, this is very very dangerous. It also means that the likely hood of Justin contracting one infection/virus after another is very very likely.
3. The immunosuppressants that he takes daily are mostly to blame in these low numbers. (In addition to his just generally wacky body)
4. Without those meds he would have autoimmune flare ups often and would have to take high steroid doses to be able to tolerate the pain/symptoms/flare ups.
5. High steroid therapy is what caused his AVN which caused him to have two hip replacements this past summer.
6. You see where this is going? Yes. A big fat ugly circle. <----- fact.="" p="">
So, for now the plan is just whatever. I mean, really. We are going to finish these 10 days of antivirals. Tomorrow the doctor will decide if he can finish here or at home. We will need to work on immune suppression therapy to see if we can find a way to balance all of this.
I have an ugly attitude right now and that is on the FACT list. Good thing I serve a God of conviction and forgiveness so I can go ahead and get over myself. Thanks for keeping up, y'all.

Saturday, March 1, 2014

well, dang

Unfortunately, our week took a little unexpected turn and Justin was admitted into the ICU on Thursday. He went to see his primary because he felt dehydrated and wanted to get some fluids in his PICC. His Dr took one look at him and drove him immediately to the ER. His lungs sounded terrible and his vitals were all out of whack. When Justin and I both got so rundown during his last hospital stay I got the shingles virus and Justin got the very worse version of disseminated zoster virus.
Yesterday was in the top 5 of our most scary days ever. The virus entered his spinal cord and caused an extremely confused state. Doctors were in and out and the main concern was that Justin is just a very rare patient. He can't be treated like the typical patient. This disseminated virus is extremely uncommon and very dangerous for a guy like him.
TODAY has been a MAJOR improvement. He is not back 100% mentally, but he has made some huge strides and is making much more sense now. He slept all day yesterday, last night and is sleeping soundly today. He is no longer on oxygen and the rash that covers his body from head to toe is improving. The Dr said since the only treatment for this virus are the IV meds he is on now...the next best medicine for him is SLEEP. As you all know, he struggles with sleep issues in general. So the fact that he is sleeping like this now is a huge praise. He is in the PCU unit which is a very strict floor regarding visitation. Masks and gloves must be worn and only two visitors are allowed at a time. His parents are here now, so he can't really have any extra company at this time. He will be here for a minimum of 10 there will be time for visitors later this week. His immune system is compromised in general, but in a much more fragile state at this time. If you are sick or feel like you may be sick or live with people who are sick...please be extra cautious around any Macs. We love YOU but not your germs :) I am doing my best to stay focused on Justin and off my phone. Katie has the most updated info and I will do my best to keep important updates known so that the prayer pants can be ON.
I stayed in the hotel across the street from the hospital last night so I could be near in case anything weird happened. I am not sure what my plans are for tonight, but I will play it by ear. The boys are covered for now and we have a care calendar set up for meals. Justin is not out of the woods yet...but I am telling you guys... this dude is a warrior.