Friday, May 1, 2015

A Day of Hospital Tests and Just As Many Questions As Answers

As most of you know from reading this, today Brandon had an MRI at UNC Hospitals. He was scheduled to have an MRI at 9:00am and then see his doctor immediately following.  I could tell he was nervous and got up bright and early to get to work before he had to be at the hospital. He told me this morning that his main concern about the MRI was having to drink contrast, because it causes major discomfort in his abdomen, and plus it tastes disgusting. Well, he ended up having to drink the contrast not once, but TWICE, because it wasn't showing up clearly enough on the scan.


I told him "you can do anything for a short amount of time" because that's what my mama always told me growing up anytime I had to do something difficult or uncomfortable.

After the MRI, Brandon went right to clinic and was seen by his doctor. There he was told that most likely he would have surgery on Monday, and then he was whisked away for bloodwork, and back to the clinic.

Yes, our hearts stopped...

It turns out that we have good news and bad news.

The good news is that Brandon doesn't have to have surgery (today, at least) after review of the MRI, or an abdominal stent put in (think balloon heart catheter, but for your intestines).

The bad news is that Brandon has a very aggressive form of Crohn's disease and his MRI showed that his intestines are highly inflamed. The doctor said that about 20% of Crohn's patients have his type of Crohn's disease: Stricturing Crohns, which basically means his intestines are constantly inflaming and forming scar tissue.

If you're following along, you're probably putting 2 and 2 together. Brandon has a flare up, scar tissue forms, repeat repeat repeat, Brandon has surgery, Brandon has flare up, scar tissue forms, repeat repeat repeat, until when? Until he has nothing left? Until he's been cut open more times that we can count?

So what's the plan?

The plan is to immediately begin a steroid regimen to try and decrease the inflammation. Long-term, the plan is to have Humira injections multiple times a month. The nurse is working on getting insurance approval for this therapy though, because initial injection costs are $6,000 and regular monthly maintenance costs are $2,000. We are praying that insurance will pay the majority of this cost, because once Brandon begins this kind of therapy, he can't stop it and begin it again because his body will develop antibodies to it and it will be ineffective.

This worries me. There are only a handful of drugs out there that will work with this kind of condition. And there is a 50% success rate with each one. And even if one of these drugs works for him, there are lots of side effects.

We are swimming in information from today. It seems like so much to know all at once, and we want to make the right decisions, not just for right now, but for long term. We have so many questions about how to manage this condition and what is best for Brandon. Please pray with us over several things:

For complete healing... but if not...

That the inflammation would go down with the course of steroids and that no further intervention is needed to get over this flare.

That the insurance would cover the cost of the injections.

That his body would respond positively to the injections and the other medication he will be put on.

That he would suffer no side effects.

We are so thankful that we have such an army of prayerful friends who are joining us and lifting us up. We are surrounded by friends and family who have shown us love and concern and have kept encouraging us all day long. My phone battery is dead already because of all the messages I received constantly all day. You all are the best. We love you so much! You don't know just how much your kind words mean to us.

We want Christ to be glorified through our lives and how we respond during trials like this one. We are grateful, desperately grateful, for His grace and mercy because though the last year has been nothing like we ever imagined, we are far more blessed than we even know. We sat at home tonight and soaked up our beautiful family. We can only hope and pray that God is using this to mold us to do great things for His glory and that others may come to know the source of our strength, for we are not along.

I was reminded today of that beautiful promise when I heard a certain song on the radio and thought of this verse:

Isaiah 41:10 So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.

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