Crohn’s Update: Day 7

Crohns-Disease-updateA week ago we had just gotten home from church, enjoyed lunch together, and spent the afternoon resting and doing some decluttering. If you had asked us then what we thought the week ahead would look like, we surely wouldn’t have said we’d be spending the week at the hospital!

Today is the 7th day Brandon has been at UNC Hospitals. Here’s a little timeline:

Monday – ER visit to local hospital in the wee hours of the morning, CT scan shows intestinal blockage, transferred to UNC Hospitals Monday afternoon

Tuesday – lots of round and round

Wednesday – MRI done and more round and round

Thursday – more round and round

Friday – endoscopy procedure to drop a capsule down as far as they could

Saturday – several X-rays that showed the capsule stuck at the same point in his intestines

Sunday – More X-rays and another CT scan, oh and more round and round.

We’re currently waiting on the results of the CT scan and what they plan to do next. There’s been talk of another camera pill (do you guys remember that? He swallowed a camera pill once before that got stuck and had to be surgically removed with the part of bowel that was overtaken with scar tissue.) and maybe even trying to get things moving along.

To us, its sounded like this – “Hey, we know you have a blockage, but we don’t want to operate just yet. So here’s what we’re gonna do, we’re gonna make you do a bunch of tests to confirm you have a blockage, and then do some more tests, oh and then we’re gonna do one more. Oh and you can’t eat all week. Oh, and drink 2 bottles of contrast for your MRI even though you have a blockage and will be miserable. Oh, and yeah, we don’t care how long this takes.”

For those of you fairly new to our story, Brandon was diagnosed with Crohn’s Disease 5 years ago. Those first 3 years were fraught with hospital stays, 4 surgeries, lots of scans, and trial and error with his medications. Since his diagnosis we’ve had 2 babies, both of us have changed jobs, and we’ve moved and had a multitude of other changes. To say the years have been busy would be an understatement. Last year was relatively a good year for Brandon’s health. We settled into a nice rhythm with his infusions, and only had a handful of hospital stays. We were getting the hang of this parenting 3 kids deal – not that we’re any good at it, or that we don’t lose our minds most days – and were enjoying a bit of a calmer year.

But see, what most of you don’t know is that even when we don’t have lots of hospital stays, Brandon still battles Crohn’s Disease The way I put it to a doctor earlier this week is that you and I, see, we eat breakfast, lunch, and dinner, and don’t think a second thought about it. Well, maybe we do, if we ate that greasy pizza too late, or regretted those spicy tacos, but for the most part we eat, and then we go on about our day. Day in, and day out. Brandon, however, has a very different relationship with food. Every decision he ever makes before eating is a calculated decision, taking into account what the food is, how much of it he can eat, where he is when he eats and where he’ll be afterward, and the timing of it all… are we going to be going out of town? Will he be in the car for a long period of time? Will there be places to stop along the way? Will he be sitting in a crowd of people? Can he find an end seat near the back? Do his kids have any special events coming up that he doesn’t want to miss, such as a soccer or basketball game? Have we arranged a babysitter for the elusive date night?

Conversations in our house often go like this:

Me: Hey babe, what do you want for lunch? Brandon: Don’t pack me anything, I’m not going to eat today?

or Me: I made fiesta chicken in the crockpot and kept the corn out to add to mine separately so you can have some and it won’t hurt your stomach. Brandon: I’d love to have some, it was really good last time, it was, but I’m a little nauseous.

or Me: Babe, do you want me to go get you some soup? You have to eat something. Brandon: No, its ok, I probably don’t need to eat anything right now.

A lot of you are reading this and thinking wow, that’s sad, but honestly, that’s our normal. It’s our baseline and we’ve become accustomed to it. We’ve figured out how to make it all work, and how to wrangle this beast of a chronic illness. Our kids know the meaning of words like “semi-private room” and “CT scan” and “infusion” and that’s OK. They know to expect the unexpected, and are used to FaceTiming Daddy when he “goes to the hospital because his tummy hurts.”

You know why we’re been able to “get used” to all this? Because of Daniel 3. Do you know the story of Daniel 3? Of Shadrach, Meshach and Abednego? Their story is one of faith. They were followers of Christ who refused to worship false gods and an idol of gold even though the King at the time demanded it. As punishment for not worshiping the gold statue of the king, they were tied up and thrown into a fiery furnace that had been heated up to 7 times hotter than usual. It was so hot that the guards used to throw them in burned up in an instant. When the King looked in the furnace, he noticed that there were 4 men walking around, unbound and not burned, and asked them to come of out the furnace. Not a hair on their heads was singed, nor did they so much as even smell like smoke. Because of their faith, and their unwillingness to serve anyone but God Himself, the King was transformed and declared worship only to the one true God.

That story has always been one of my favorites, but now verses 17-18 have special meaning to me:

17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

Did you catch that? The God we serve is able to deliver us. He can do all things. He is the Ultimate Healer, The Great Physician, The Mighty Warrior, The King of Kings, The Great I Am, Abba Father, The God Who Sees, and Yahweh Yireh or the Lord Will Provide. He can do anything. Because He is ABLE.

He can heal Brandon. He can take away the pain, the nausea, the discomfort, the uncertainty, the hospital stays, the tears, the anguish, the misery.

But, if not…

*Swallows hard*

But, if not…

*We can’t do this… can we?*

We know You are able, God, but IF NOT, we will still serve you.

I feel that one deep in my chest.That one is a little harder to get out, to muster up. That one is difficult when the hospital days are long and the questions multiply. But, God, in His infinite wisdom, knows what we’re enduring, and cares for us so much.

But if not, God, use this week to change our lives. Use this week to tell others about You. Use this terrible disease to shine hope in the lives of the hopeless, peace in the midst of unrest, and joy in the deep dark edges of sorrows.

I know this… that God was not surprised by this week and is not overwhelmed by our circumstances. He is not shocked by test results or worried about what to do next. He has carefully ordered our steps and numbered the hairs on our heads. We are asking Him to heal Brandon… BUT IF NOT, we will still serve Him… for He is good.