Thankful Thursdays

Today, I am thankful for:

1) my husband. J-bird is currently in the hospital recovering from a major surgery for his Crohn's Disease, a resection of his small intestine. Instead of the desired (and much hoped for) strictureplasty, they had to do a resection and remove 25 cm of his small bowel. He's doing so well. It's nothing compared to his surgery two years ago. He's my best friend and my partner in all of this. I need him and the guts he has left.

2) our loving friends and family. Having major surgery and dealing with the hospital is bad enough but without a strong and loving support system, it would be impossible. We are both so thankful for everyone who has emailed, called, posted to facebook, come to the hospital, cooked food, cared for Goose. We are loved.

Everyone needs an advocate.

For my husband, an amazing patient. I hope you're not a hospital patient for a long, long time after this.
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Everyone needs an advocate when they're in the hospital. Without someone to look out for your interests, make sure you get your meds on time, fetch you popsicles, it would be hard to be a patient in a hospital, largely confined to a bed. J-bird has been in the hospital since Monday, when he had surgery related to his Crohn's Disease. Someone has been there with him for almost every minute he's been there, and he's needed it.

What else might you need for a hospital stay?
Toiletries
Electronics/books/magazines to keep you occupied
Copy of your Advanced Directive/Living Will
Comfy clothes for when you're finally able to get dressed
**Photos of you with your family

Why are photos so important? I think it helps the nurses and doctors connect to the patient as a person, and not just another patient. I made a page with photos for J-bird and wrote encouraging messages around the page. I put the page in a sheet protector so it wouldn't get yucky in the hospital-- honestly you never know what kind of fluids will be around. It gives him something to discuss with nurses besides his urine output and frequent popsicle requests. It makes him a person. It shows that he has people who need him.

Being in the hospital and recovering from a major illness or surgery is hard enough without adding in the mental components of hospitalization. You're isolated from the world, mostly stuck in a bed or chair, usually wearing a hospital gown, and often go for a while without regularly bathing. You have no real schedule, especially if you're not able to eat. There are no meals to divide your day, and people are in at all hours of the night to check vitals, draw blood, replenish IV fluids, administer meds.

Having only been hospitalized for Goose's birth, I imagine that it's hard to feel like a human and it's easy to get depressed when you're in the hospital for any amount of time. Having items there to keep you occupied and that remind you of home/your normal life (laptop, magazines, books) is important. Spending time with people who know and love you is also extraordinarily helpful. You remember that the hospital isn't your life, it's just what you're stuck doing for a short period of time. You are not defined by your illness, you are more than a patient. You're you.

If you're hospitalized or act as an advocate for someone who is-- Be positive. Speak up. Ask questions. It makes all the difference.

It's just not fair.

Just like when you were a kid, it's not fair that _______ . Fill in the blank.

#1 life lesson: it's not fair.

J-bird has been dealing with Crohn's Disease for more than half of his life now, and has already endured one very scary and painful surgery from which he almost didn't recover. He doesn't remember Goose's life as a newborn. I think at times he only remembers the birth because it was so emotionally charged and well-documented. Crohn's has taken a lot away from him, from us.

And now, here we are less than 3 months away from welcoming Baby Boy, and we are preparing for another major surgery due to Crohn's Disease. Yes, it's not fair, but it's our life. Our life, more than J-bird's life alone. We're all in this together.

So at just 30 years old, we're talking with surgeons about how to save as much of his small intestine as possible so he doesn't develop short bowel syndrome and die sooner than he should. Most 30 year olds don't have to deal with this, and don't have to consider what will happen if they have to keep having surgery after surgery and how they will talk to their kids about it. And most 30 year olds don't have to think about what would happen if, God forbid, they really didn't have much time left, if their spouse didn't have much time left to be their partner. None of us know how much time we have, and how much time we will have with our other half, but dealing with a major illness brings all that fear and uncertainty to the fore.

We can keep saying, "It's not fair," but it won't change anything. We can dwell on the negative and get so mired down in the sadness and the anger that we can't see straight, but we are choosing not to do that.

We have a good life. WE HAVE A GOOD LIFE-- TOGETHER. A house, a beautiful daughter, a son who will be here in October. And we have experienced more love together than some people will ever get the chance to have. We are immensely blessed despite this terrible disease. And we must focus on enjoying every day that we have together, as a couple and as a family, for it's all a gift.


Please pray for us in the coming days and weeks. Pray for peace, for healing, for long-term good health for our family, for many years together. 

Squirt!

Literally. Mr. Making It Bright spent Sunday prepping for his colonoscopy this morning.

Why is my young husband having a colonoscopy?
Crohn's Disease. It's part of his regular care.

What is Crohn's Disease?
According to CCFA (Crohn's & Colitis Foundation of America), "Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract."

What are the symptoms?
As listed on the CCFA website, "Persistent diarrhea (loose, watery, or frequent bowel movements), crampy abdominal pain, fever, and, at times, rectal bleeding: These are the hallmark symptoms of Crohn's disease, but they vary from person to person and may change over time. Loss of appetite and subsequent weight loss also may occur. However, the disease is not always limited to the GI tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint. Children who have Crohn's disease may suffer delayed growth and sexual development."

For my husband, he spends a lot of time in the bathroom, he needs to watch what he eats, and he has to try to keep his stress low or manage it extremely well. He's been living with Crohn's for the better part of his life, since he was 12. He's been on a variety of medications, most recently Cimzia in combination with methotrexate. It seems to be working (THANKFUL!) but we can't say how much is the Cimzia and methotrexate, and how much of his most recent remission is due to his reconstructed intestines.

Less than a month after Goose was born, Mr. Making It Bright drove himself from work to the ER during a Crohn's attack. By the time I arrived with our three-week-old baby, he was writhing in pain and screaming, begging to be knocked out.  He was admitted and 3 days later, the doctors had determined that his small intestine had perforated and emergency surgery was necessary. I had just come home to drop off milk/nurse/cuddle my baby when I got the call to come back immediately. I barely made it back to the hospital before he had to be wheeled back. He kissed me and his new daughter, whom he had barely gotten to know due to the high amounts of pain medication he was taking to get him through the Crohn's pain he had experienced for the last third of my pregnancy and her first few weeks.

I didn't know what the outcome would be, but I had to be hopeful. I had a newborn. I had a newborn and a very sick husband. And I was still recovering from a rough labor and unexpected c-section. Wow.

I sat next to him in the ICU and addressed and stuffed the birth announcements for our daughter. And I talked to him like he could hear me. That was the worst part-- not having my best friend to talk to. 

Mr. Making It Bright spent a total of 16 days in the hospital. After he finally got off the ventilator (5 days-- several of those wide awake), his recovery in the hospital was much less scary-- at least for me. Yes, he had a lot of recovering ahead of him, but I didn't have to be afraid of him never coming off the ventilator or never moving out of the ICU. He hadn't eaten in days and they even stopped TPN several times because his blood sugar was so out of control. He was wasting away in front of me. His muscles had atrophied, he couldn't lift himself up in the bed, he couldn't walk to the bathroom without assistance. He slept a lot, had tons of medication, finally started eating and having occupational therapy, and would have a long recovery at home.

I took him home and everyone left-- my mother who had cared for Goose, Mr.'s parents who shared shifts at the hospital so he was never alone. He had a PICC line still in his arm, convenient for the IV antibiotics I would give him for weeks after his discharge from the hospital. So I would get Goose set up on her play mat, with her magic star, and then start the antibiotics for the Mr. And I would sing, and dance, and try not to cry while taking care of both of my babies. If everyone was fed and mostly clean, it was a good day! I typed up his medication schedule because there was too much to try to remember, so many bottles of pills. He slept in a bed set up in our living room-- he was too weak to go upstairs. He was still heavily medicated for his pain so my husband wasn't fully present. I've never felt so lonely.

In the months following his surgery, our rowdy trio-- me, our daughter and her stroller, my Mr. and his walker-- went to too many doctors' appointments to count. Infectious Disease because his guts spilled out all over his insides, Surgeons because his incision was left open, Gastroenterologists to manage his Crohn's, Palliative Care to help manage his recovery at home. It was a full-time job just to manage all the bills and appointments.

Mr. Making It Bright having emergency surgery was one of the hardest ways to start out as new parents. He couldn't even hold our little lady on his own, without someone to help and watch. But we did it.

He made it through his (at times, miraculous) recovery partly, I think, because of love. Our love for each other, and for our daughter. Our marriage made it most definitely because of love. Those months were hard on both of us individually, and as a couple. It took a lot of work to rebuild, and it wouldn't have happened without love. Such love.

Before he went back to surgery, he told me, both of us crying, not to worry about him going anywhere because he loved me too much. And I remember talking with a good friend, the closest I'll have to a sister, while I was sitting next to his bed in the ICU, before he woke up for the first time after surgery. She said that we didn't love each other the way most people love each other, that our love was something special and different. That would make all the difference.

I had to believe in that special and different love then because I had to know that my soul mate, my other half, was going to stay here with me and with our daughter. And I believe in it now because we still choose to be together every day.