Post Op

Well, I’m finally home. It’s been 6 days since my surgery and 11 days since I was first admitted to the hospital. What was it like to spend two weeks in the hospital? Frustrating. People always encourage you to get plenty of rest when they hear you’re in the hospital, but it’s almost impossible. I was constantly woken up so that the nurses could take vital signs, give me medicine, administer Heparin shots, replace my TPN, administer IV antibiotics, etc. Once I was woken up, it was hard to go back to sleep because of the pain and discomfort.

But I’m getting ahead of myself. Let’s start with the day of surgery, which was filled with anxiety. My husband and my parents came to the hospital, and in the hours leading up to the surgery, it was obvious that we were trying to talk about anything other than the fistula in the room. Of course, there was a delay in the OR so that just made us more anxious. When they finally took me back to pre-op, I was surprised by the number of people prepping for surgery. The large room was filled with smaller rooms divided by curtains, each with someone awaiting surgery; it was like horses in a stable.

When the anesthesiologist finally said they were ready for me, the atmosphere around me quickly changed. Up until this point, I was nervous and my family remained calm. But when my husband and my parents gave me a hug before the doctor took me away, they each started tearing up. This time, I was the calm one. I’ve spent the last few months in chronic pain, dodging surgery as if it were reserved for the lost causes. Now, headed to the OR, I was at peace with what needed to happen. I know that God has promised good to me and I put my trust in Him.

Three hours later I woke up, back in the stable, and I immediately asked for my husband. Matt came and held my hand as the nurses gave me pain medicine and monitored my vitals. Eventually my parents were allowed back too, and it was clear that we were all so relieved it was finally over, not just the surgery, but this chapter in our lives. When I was finally coherent enough to notice my surroundings, I realized that I was hooked up to more things than you can imagine. I had two drains coming out of my stomach, a catheter, and antibiotics and TPN attached to my PICC line. Luckily I didn’t end up needing an ileostomy bag, which was my biggest concern. In fact, when I first woke up from surgery, they said I repeatedly asked if I had a bag and they kept reassuring me that I didn’t.

When they took me back to my room, I couldn’t focus on anything but the pain. Every hour I complained to my nurse, so I didn’t get much sleep. The doctor finally prescribed me stronger pain medication and I slept most of the next day. Once they removed the catheter, getting up to go to the bathroom was like untangling a web of tubes and cords. I’m so thankful that Matt stayed with me all weekend to help through those first few challenging nights.

I started my recovery with baby steps, literally. I walked from the bed to the bathroom, then I walked from the bed to the nurses’ station outside my room, and finally I walked the entire floor. Four days after my surgery, I was ready to walk out the door. The staff removed the drains and PICC line and I was no longer physically attached to anything. I won’t describe what it felt like to have a tube pulled out of your stomach, but let’s just say I shouted something incomprehensible.

And now I’m continuing my recovery at home. I can’t lift the girls or drive for two weeks, which is difficult. It’s hard not to be able to get up and go like I used to, but I’m dealing with it. The reality is that I’m blessed to have had a competent surgeon, a successful resection, and so far, a smooth recovery. On discharge day, while I was being wheeled out of the hospital by a nurse to meet my husband, this reality hit me like a ton of bricks. One of the nurses who took care of me all week, who brightened my day with stories of her grandson, who made my bed for me and brought me fresh water to make me more comfortable, and who cheered me on while I slowly walked the hallway, shared with me that she too has Crohn’s disease. She was misdiagnosed for almost 10 years and by the time they correctly diagnosed her, the disease had progressed so much that it almost killed her. She had five surgeries, including one to remove her entire colon, resulting in a permanent colostomy bag. I was stunned. How could this woman take care of me all week and not share this sooner? Why didn’t she remind me that things could always be worse? I don’t have answers to these questions, but I do know this: I’m thankful for her patience and compassion. I’ll continue making baby steps with her in mind.

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An ode to solid food

Oh, how I’ve missed solid food. It’s a relationship I didn’t appreciate until my GI tract came between us. If I thought I’d be good at it, I’d write an ode to all the foods I’ve missed these past two weeks. (Obviously it would start and end with donuts.) Now I don’t have to leave the room when my family sits down for dinner, I can enjoy my husband’s cooking. I don’t begrudge preparing a snack for Mackenzie, and I can even laugh about the night I almost licked a peanut butter cup in desperation. It’s amazing how much returning to my regular diet makes me feel like a normal person again.

Clearly, the results of my CT scan on Monday were good. The abscess is gone, which means I can resume an IBD-friendly diet. I spoke with my dietitian and we’re going to cycle down my TPN over the next two weeks and then remove the PICC line. My doctor is setting up Remicade treatments, and I hope to be on the road to remission soon enough.

The surprising news is that there is a fistula forming between my bowel and bladder, which isn’t good. My doctor forwarded my CT scan to Johns Hopkins and I’m waiting for them to determine next steps. Two weeks ago this would have consumed my thoughts, but not now. It is possible that I will need surgery to remove the fistula, but then it’s gone forever; that’s good news. Studies have proven that sometimes Remicade can dissolve a fistula; that’s great news. Either way I have a problem that can be resolved; that’s even better news. I can’t let myself become overwhelmed by “what if”; I have to focus on “what is”.

Recently my GI gave me a pep talk of sorts. He said there are generally two types of Crohn’s patients, those with a mild or moderate form of the disease and those whose disease has begun to perforate, creating complications. He said I need to accept that I’m in the latter group, which means the occasional abscess, fistula, and Lord knows what else, but all we can do is resolve one problem at a time. I realize this might not sound like much of a pep talk, but he reminded me to “be still” and take one day at at time. When I was in the hospital I felt like I had a laundry list of problems and the road to recovery seemed overwhelming. But guess what? I was out in a week with two less problems than I had before. In other words, it might take time, but I’ll get there. And in the meantime, I’m eating peanut butter cups.

 

Back at home

I’ve been home for about a week now and it’s been a strange juxtaposition between old and new. I feel like everything changed for me while I was in the hospital, meanwhile it’s as if nothing changed at home. The girls still need the same things: food, diaper changed, bath, nap. Mackenzie still wants to eat cereal for every meal, Lexi still has a runny nose, and my husband still can’t find his watch. I find comfort in their consistency.

The biggest adjustment for our family is the PICC line. Every night my husband hooks up the TPN, which isn’t a quick process. First, he washes his hands and puts on latex gloves. He takes the TPN bag out of the refrigerator, along with my antibiotic. Using a syringe, he injects an antacid and two different vitamins into the TPN bag, and then massages it to ensure everything mixes. Next he hooks up the tubing between the pump and the TPN bag and “primes” the tubing. The TPN fills the tubing and stops when it gets to the end to ensure there is no excess air. Using an alcohol wipe, he cleans the end of my IV catheter and flushes it with a saline syringe. He cleans the catheter again and attaches the TPN tubing. Once it’s hooked up and ready, the infusion runs for 12 hours. The next morning, when the infusion is complete, my husband disconnects the tubing. He cleans the catheter and flushes it with a saline syringe. He cleans the catheter once more and then flushes it with a heparin syringe. He completes the process by clamping the catheter so nothing enters my PICC line while it’s not being used.

If it sounds like a lot, it’s because it is. And while the preparation for the TPN is inconvenient, so is being attached to it for 12 hours. We spend our evenings keeping a curious 2 1/2 year old and a grabby 8 month old away from the tubing. The TPN bag rests in a backpack that I wear around the house, but the tubing extends from the backpack to my arm. It’s very easy to trip over the tubing or for it to get caught on something. I feel like I’m walking around in a minefield.

However, for all its trouble, the TPN is doing its job. I’m getting the nutrients I need each day and I’ve gained back 5 pounds. In fact, I’ve been feeling so good that I returned to work this week, and my family is quickly returning to our normal routine. I’m back to singing “Old MacDonald”, heating up bottles, and enjoying bedtime snuggles. I wipe noses, kiss boo-boos, and beg Mackenzie to let me brush her hair. My husband and I are working as a team more than ever before since I can’t lift more than 15 pounds because of the PICC line. This experience has tested my family’s strength and resilience, and we’re closer for it.

My next step is to meet with my GI tomorrow. I’m praying for good news!

 

My last day in the hospital

I can’t believe it, but I’m being discharged this afternoon! I can’t wait to see my husband and kids. I can’t wait to sleep in my own bed. I can’t wait to get back to normal life.

I’m going home with my PICC line and a CPN (central parenteral nutrition) bag. A home care nurse will visit our house tonight to show my husband and me how to administer the CPN and antibiotic intravenously. In addition to the CPN, I’m on a clear, liquid diet until I meet with my GI in two weeks. He will do a CT scan to ensure the inflammation has settled, and if it has, he’ll remove the PICC line and I can slowly reintroduce solids into my diet. For now, all I can think about is donuts.

When I reflect on the week I spent in the hospital, I think about what I’ve learned. I’ve learned that I need to stop putting myself last. I walked around in pain for a week before I finally did something about it, and guess what? When I got to the hospital no one handed me a medal for suffering. I have to stop worrying about how my illness might affect the girls’ schedule or our family’s weekend plans. If I’m not healthy, I can’t support my family, so I have to do what is necessary, and sometimes that means taking time out to receive the treatment I need.

I’ve learned that my illness is serious and I have to start treating it that way. I need to stop thinking that I can just take a pill and everything will be okay. This is about more than just medication; this is a lifestyle change. I have to manage my Crohn’s disease on a daily basis and recognize that this affects my entire family.

I’ve learned that my family can function without me, but that doesn’t make me irrelevant. This has been a tough lesson for me to learn. I pride myself in organizing play dates, preparing the girls for Crazy Hair Day, and keeping my family on schedule. However, this past week my husband handled everything. I’m sure Mackenzie’s hair wasn’t done each morning, they ate McDonald’s for dinner, and who knows what else, but they survived. Instead of focusing on how life moved on without me, I need to appreciate that I have a husband who can pick up my slack when I need him to, and I have two kids who are resilient enough to roll with the punches.

I’m thankful that I allowed myself this week to receive treatment, rest and recoup, and I made a promise to myself that next time I won’t wait a week before seeking help. Sometimes I have to come first.

 

Day 5 and counting

It’s Day 5 of my hospital stay and I’m waiting for the doctors to drain the abscess.

In addition to the abscess, we’re managing my nutrition. I’m still not allowed to eat or drink anything, and today they put in a PICC line. If you, too, hadn’t heard of a PICC line until now, it’s a catheter inserted in your vein so that you can receive medicine or, in my case, nutrition intravenously.

Despite my anxiety, the process was quick and easy. Two health care providers did the procedure right in my hospital room. Everything was covered and sterile, and they gave me some anxiety medicine right before they inserted the IV. I didn’t feel the catheter follow my vein, and before I knew it, it was over. It looks like a large IV in my lower bicep with two “prongs” hanging out, one for medicine and the other for nutrition. The IV is heavily taped so it stays dry and sterile.

I’m currently slated to receive the IV nutrition 24 hours a day, and we’ll slowly cycle down to 18 hours, 16 hours, and 12 hours a day, and then they’ll discharge me. When I’m discharged, a home care nurse will come by twice a week to draw blood to check my nutrition levels and to check the IV.

In the midst of all this, my blood sugar dropped and I was permitted three sips of apple juice. That’s right, three. They actually counted each sip. I’ll leave you with that.