Day 4 Hospital Update

Well, I suppose its time for an update. We've been in the hospital since early Thursday morning (thanks a lot Crohn's) and the plan is for us to be discharged home today. (I say "us" and "we" because when your spouse is in the hospital, both of you are "in the hospital" if you know what I mean. Life isn't the same during that time and what happens to one of you, happens to the other.) We are more than ready to go home.

Thursday and Friday were filled with anxiety because we weren't sure if Brandon was going to have to have surgery again or not. And before we move on from this, let's talk about why this is such a big deal. Abdominal surgery is risky - not that other surgical procedures aren't - but there are some risks that make it a very scary option. There is always risk of infection, risk of perforation - think of this like a balloon that is being squeezed and a little section pops out that is thinner than the rest and then pops from the pressure - and risk that his intestines might not heal back together. All of these are very serious complications and of course one that isn't life threatening but certainly life altering is the risk that he might come out of surgery with a colostomy bag. If you don't know what this is, google it. You'll know why we are so averse to even the thought of that occurring.

Brandon's GI physician (the one he sees in clinic for his outpatient visits), who specializes in Crohn's Disease, came by to see him Friday and decided that he wanted to take a more conservative approach and leave surgery as a last resort option. We were relieved but concerned, and I'll explain why in a minute. His doctor said that we were going to approach this intestinal blockage with high dose IV steroids for a few days, be discharged on oral steroids, and increase his Humira injections to weekly instead of every other week. He is also adding another medication for Brandon to inject every week in addition to the Humira.

We asked his doctor if this approach would be enough to avoid surgery, and he said that maybe for a time, but that at this point, with the way his blockage looks on his CT scan, that surgery is probably inevitable down the road. Our concern is that we are putting off something that might help Brandon feel better, and for what? For a few weeks or months of feeling decent... For a few weeks of feeling anxious about every meal. Will this be the meal that aggravates the spot that is irritated already? Will we be back in the ER this week?

His doctor seems confident that the Humira is working and that with this plan of attack he can be OK for a long time. We have to trust that he knows what he's talking about pray that the Lord takes away our anxiety, because like with most things anxiety and stress makes Crohn's worse. Ugh.

As with Brandon's previous hospitalizations, I've found myself with a lot of time of my hands to think and reflect and pray. I know we are so blessed, even though we are where we are right now, I thank God that it isn't worse, because it could be. His "c" diagnosis could be cancer instead of Crohn's, and instead of Brandon it could be one of our little boys. Just yesterday, as I was getting my visitor's pass, I saw a family walking down the hospital concourse, holding the hand of a small child - no more than 4 years old - who had just patches of wispy hair left on her head, from chemo no doubt. I swiftly wiped 2 tears off my cheeks and had to turn away. God was whispering softly to me at that moment "I know what you're going through. I see you and feel your hurt, but you are so blessed, child." Yes, we are.

It is good to be reminded of that, because this whole hospitalization, I've found myself hardened and hmm, maybe a touch grouchy (I know you all find this hard to believe, but yes, its true. Haha). First of all, the whole stay has been drastically different from the stay last August. We spent almost 24 hours in the Emergency Room - read: loud, impersonal, uncomfortable frustration zone - and then were moved to a communal style observation holding area. This is basically where they aren't sure if insurance will pay for your visit or not, and they don't know what the plan for you will be so they put you in a big bay with other patients, separated only by curtains. Much like the Emergency Room, but with a different bed.

Then, we were moved to a semi-private room (pictured above)... that means that we have a roommate and basically NO privacy. So, in the middle of the night when the nursing assistant comes in to take vitals, we get woken up twice, same with labs, nurses, doctors, and meals. Brandon's bed is right by the door, and the bathroom. Yaaay (note the sarcasm). You don't really get any rest when you're in the hospital, but this time we got about half of what we got the last time. Awful. I don't mean to be grumpy, and I'm trying not to be but I have found myself approaching things like "wonder how much THAT doctor is going to cost us?!" and "You don't NEED an EKG! We're going to have to pay for that! Ugh!" and focusing on all the little things adding up. I know I'm just putting more stress on myself, and its because I'm tired, both physically and mentally, and partly because I've worked in a hospital system before, but I need to stop. I know that getting Brandon the best care possible is the goal and all that matters at this point. I brought my relaxing essential oils blend to help and Brandon said "it smells like home now." That made me smile. (Can you tell I use it a lot at home to de-stress?! lol)

On top of everything else, Friday was Brandon's BIRTHDAY. Yep, the poor guy spent his birthday in the hospital. And on a liquid diet too! What a bummer! Seriously, I was so sad all day for this guy and we tried to be upbeat but there's really no hiding the fact that he is spending his special day in the hospital. He was supposed to wake up to a box of his favorite donuts on his birthday, and instead he got a few bags of IV fluids, some juice, and a couple of little hospital cups of chocolate ice cream. A big BIG thank you to my mom, for sending a bunch of balloons and a gift to his hospital room, even though she couldn't be here in person. Made his whole day!

If you'd like to pray with us, and pray specifically, here are the things we are praying for at this time:

• That we would be discharged today
• That Brandon will continue to tolerate food and the steroids continue to reduce the inflammation
• That his doctors would have wisdom in creating a plan that will be the best for Brandon both now and the long-term
• That he would have no pain, nausea, or bloating
• For our boys... we hate this disruption of life for them but kids are resilient, right??
• That we can get good rest tonight (hopefully in our OWN BED!!! **happy dance**)

Thank you, sweet friends, for the countless calls, messages, comments and offers to help. We are overwhelmed once again with how loving and caring our friends are. God is humbling us and teaching us far more than we ever thought we would learn with this disease. I pray that God would use us, move through us, for His glory.

A Crohn's Emergency Room Visit

Our Crohn's Emergency Room Experience

 

Basically if you have Crohn's, it really stinks to have to go to the Emergency Room. Because you're in lots of pain, really nauseous (with potential of throwing up in front of other people - awful, just awful), and feeling really bloated, but you're not considered to be a "life-threatening" case in the eyes of the ER staff. That being said, things move realllllllllly slow for you. Why? Because the guy who comes in having a heart attack, and the family who've been in a car accident take precedent and your doctor ends up spending lots of time with them, and you lay there looking at the same spot on the wall for, eh, roughly 15+ hours.

This was us in the Emergency Room today. We saw a hospitalist right away, got labs and some other tests done quickly, and then sat... and sat... and sat some more, waiting for Brandon to be taken back to Radiology for a CT scan. Then we waited for um, a long time, and a little while longer, for the results to be read. Then we waited for someone to come and tell us the results. Then we saw a few more doctors and did a little more waiting. Oh, and we're still waiting. Ha. No, really, we are.

Brandon has a partial intestinal blockage at the site where they stapled him back together after removing those 18 inches in his surgery a year ago. One of the physicians showed us the CT scan and it is crazy that you can see where he was put back together and how different the intestines are above and below that site. No wonder the poor guy is in so much pain. (Insert sad face emoji.)

The whole day I was afraid someone was going to say the "S" word. You know, "surgery." The whole day basically feels like a blur, since I'm running on 4 hours of sleep, a cup of coffee, and a lot of adrenaline (and anxiety). The GI surgeon came to see Brandon this afternoon and said that they'd like to take a conservative approach, but then the GI doc called and said that the site of the blockage is too high to reach through a lower scope and too low to reach through an upper endoscopy. Sooo, essentially, our options are steroids and medications and time OR ... the "S" word. (insert despair face emoji, or the sad face one again, or let's be real, both of them)

I cannot tell you how exhausting an Emergency Room visit of this magnitude is. I'm sure some of you know what I'm talking about, but for those of you who have been blessed enough to have never had to visit the ER, its just this crazy hurry-up-and-wait, anxiety-filled time of pain and unease, and getting really stiff (hospital furniture leaves a lot to be desired). Plus, there's this thing called shift change, where all the nursing staff switches out and you have to get to know a new nurse, feel them out (you know, whether they have a good attitude or if they stink, or whatever) and tell your story AGAIN. We probably said the same thing 16 times today, because that many doctors and nurses were in and out of our ER room. Plus, its this disjointed awkward retelling of the story, because we're sleep deprived, one of us is doped up on pain meds, and we can't remember who we told what, and when. And leaving out details is not an option, not when your intestines are at stake anyway.

On a high note, I got to eat a really lackluster sandwich from the hospital cafeteria, and Brandon didn't have to drink contrast for his CT scan. I kid, I kid. That was my attempt at sarcasm as a coping mechanism, but I really did have a pretty lifeless sandwich and Brandon really didn't have to drink contrast, which is a blessing, because when you're bloated and feeling full and overly nauseous, being told you have to drink 32 oz of wanna-be powerade-like syrup is definitely awful.

Please pray that he will get admitted quickly and get into a room upstairs soon. He has been laying on a stretcher (again, it leaves a lot to be desired, or in Brandon's words "Its a glorified piece of cardboard") ALL DAY and he's ready to be a little more comfortable. Also, please be praying that the GI doctors and GI surgeons can collaborate well together tomorrow and come up with a solid solution. While we're praying we can avoid surgery, we also want the best solution for the long-term. We don't want to put a bandaid on a big problem and end up back here again next week.

Pray that we can get some rest, that the boys experience some normalcy, and that we can arrange for childcare for them if I need to be with Brandon at the hospital.

Thank you for being our prayer warriors, and for reading such rousing and comical posts (read: long and heavy/depressing) about our experience with Crohns and our long day in the Emergency Room.

Look for more rousing and entertaining satires later (insert big toothy smile emoji, or the laughing one).

Crohns Strikes Again... The Recurring Nightmare

I write this sitting in a vinyl Emergency Room chair beside my husband, who is currently hooked up to monitors and IVs laying on a stretcher. He's drifting in and out of a pain-medication-induced sleep. We've been up since around 3:00am. Brandon didn't sleep well before that either, because he was up at midnight in pain and nauseous, so its good that he can get a little reprieve from the pain now.

Mean Crohns... leave my boy alone.

Meanwhile, I've been watching the hospital's logo bounce around on a monitor and listening to the night-shift nurses switch out for the day shift while I surf the internet desperately researching what our options are. It was deja vu to walk into this ER at this hospital, because a) I used to work here and b) it feels like we were just here with Brandon. It has almost been a year since Brandon was here last and had surgery. Why, Lord, why are we back so soon?

We're currently waiting on radiology to come take Brandon back for a CT scan, and he's already had some labs and other tests done.

Our major concern at this time is that Brandon may have to have surgery again if he has another intestinal blockage. We are also very concerned that either the Humira injections are not working, or that his type of Crohn's is truly so aggressive that it can't keep up. I don't want to bore you with the details but Brandon has an aggressive type of Crohns called stricturing Crohns, which basically means that when he eats, his intestines get aggravated, and when that happens sometimes his intestines get angry and inflame - a flare - and when they get super mad at him, scar tissue forms. When the scar tissue forms, a layer is added to the inside of his intestines, making it slightly smaller in diameter. Think of it like this... say you have an empty paper towel roll and you pour thick paint on the inside every day for a year. Each time the paint is poured on the inside of the roll, a layer of paint forms, drys, and the next day another layer is added on top. Eventually, you won't have a hollow roll anymore, because the layers of paint are so thick. That's what's happening to Brandon's insides, except a little less colorful and definitely more painful.

We have more questions than answers at this time and I'll be sure to update later when we know more, but for now, please pray for my husband. This is like a nightmare to be back in this place of pain and the unknown. If you want to get specific, here's how you can pray with us:

• That the tests would be done quickly and be conclusive
• That his doctor or someone familiar with his case will be here today and can consult with the ED physicians
• That his pain and nausea would be eliminated
• That we will get answers about a solution that will work longterm (whether Humira injections or not)
• That he won't have to have surgery, but if he does that it would be minor and quick with no complications
• That he won't worry about missing work and that his coworkers will have a light day in his absence 
• That I will have the time and clarity of though to get some work done while we're here
• That our boys won't worry and that they will have a fun day (Paxton was upset this morning when he found out where mommy and daddy had to go - break my heart :( ) 

Thank you for praying with us! I hope to have a very positive update soon!

PS If anyone has any advice or experience with Crohns, we'd love to hear from you. Or if you want to leave a note of encouragement for Brandon in the comments below this post, I will read them to him when he is up to it! I know it will help him feel better! :)