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**)
No comments:
Post a Comment