365 Days Makes A Journey

A year ago, on the night of February 20, 2013, I was sitting right where I am currently, doing the exact same thing I’m doing now: studying for a Spanish exam. Unlike last year, however, I am in a more advanced Spanish course, I haven’t procrastinated my studying until the night before the test, and I am absolutely pain free as I type this.

If you are wondering why I was in pain last year, I recommend that you go read my very first post on my blog (it’s titled “The Beginning” and can be found here). When you are finished reading that post, go read my other posts as well. Don’t worry, I’ll wait for you to read everything before I writing here.

Okay, are you all caught up? Let’s continue…

Around one in the morning last year, I began having stomach pain. This was normal for me during the last 3 years and I knew how to eradicate the pain quickly. So, I wrapped up my Spanish and headed to bed as lying flat always helped. A couple hours later, though, the pain didn’t cease and my nausea was more intense.

I remember the drive to the ER. I remember it being the longest ride of my life. I remember checking in. It always seems to take a while. I don’t remember much after that: I’d assume they knocked me out with pain meds pretty quickly.

Anything after that moment feels like each scenario changed in the blink of the eye. One blink I’m in the emergency room telling my mom to call my friend Bianca and let her know that I won’t be at school for the day. Blink twice and I’m on the adult floor at the hospital with a loud roommate and the next I’m being put into an ambulance.

I don’t remember anything else. I’ve been told I went into shock after this. I’ve been told I didn’t know who my mom was at this point. I’ve been told that I was very close to dying. I’ve been told the surgeon saved my life.

The next thing I remember I woke up in a hospital room. I couldn’t speak so I tried to write my mom a message on a notepad.  I recognized one of our friends from Minneapolis in the room first. Then I saw my mom. When I could speak, I said “Mom, am I late for school? I have a Spanish test today.”

When I was awake enough, the story of what happened to me was explained to my medicated self over and over until I understood it. I had been asleep for 8 days – my class had already taken the exam and started a new section in Spanish by now.

As I look back on the year, memories fly by. Surgeries, medical procedures, NG tubes, feeding tubes, countless doctor appointments, a year and counting of total parenteral nutrition, it’s a bit overwhelming.

365 days ago, my life changed forever. Despite everything, I went on to finish that semester of school in just a week and a half after being absent for six weeks. Despite everything, I still managed to start eating again after the doctors told me they didn’t know when I’d be able to. Despite everything, I survived and am here to tell my story with a positive attitude. Has it been a long, tough, and winding road? It sure as heck has been. But one has to play the cards they’ve been dealt and realize that whatever happens in life will happen. You can’t let something that knocks you down keep you down for the count. You get back up and make the best of what you have.

I am so thankful to all the doctors, nurses, and everyone who has been on this journey with me, from the beginning to now. I look forward to continue on this journey with all of you, as well as many more unique, exciting, scary, exhilarating, fun, happy, sad, and crazy journeys in the future.

If there’s one thing I’ve learned in the past year that I could leave here as advice, it’s this: You never knows what’s going to happen in the next moment, so make the most of the one you’re in now.

Oh, also, start studying for exams before the night before the exam.

I’m Not Pumped

Stop the applause. Hold your cheers.

I’m updating the blog. I know, it’s a shock, but I am. I haven’t written anything on When I’m Better since this summer. It’s not that nothing exciting or post worthy has happened in the last 4 months or so (believe me, a lot has changed), but rather I haven’t had much time lately to sit down, gather my thoughts, and compose anything worth reading.

When I first started this blog, its main purpose to document my intestinal adventures that started in February. However, that isn’t going to be a focus of this entry.

As you may know, I have an intrathecal baclofen pump implanted in my abdomen. Due to my cerebral palsy, my muscles are very spastic. I was four years old when I had my first pump placed. While the device significantly helped me, the incision on my spine kept opening and I contracted a staph infection in my spinal fluid. I was treated and the pump had to be removed six months later, despite attempts to keep it.

Two months later, due to my spasticity, I had a selective rhizatomy. The procedure helped, but not as much as the pump did. Due to my tightness, my hips were pulled out of socket. I had bilateral hip surgery and my doctor said we need to try the pump again. I had another pump placed. While they haven’t been without complications, I’ve had pumps ever since.

For example, the abdominal incision over the last pump I had opened four times over a little less than a four month period of time. That same area is now causing me issues again.

The incision over my current pump (the devices get replaced every five years) started getting red in August. Up until a week ago, we have been keeping a close eye on it, as the incision opening up could allow bacteria to enter into my spinal fluid as it did when I was younger. On the 29th of October, I had three doctor appointments. While I was seeing the orthodontist, I asked to see the plastic surgeon so that he could look at the incision and let us know if he thought it was something to worry about. He looked at it, told me that the incision looked like it would open in “days, if not minutes” and said that I needed to have surgery to fix it as soon as possible.

On Tuesday evening, my incision opened up. On Wednesday, my doctor said that I needed to get to the hospital as soon as possible. I was started on antibiotics and we began the planning process. At first, the plan was that plastic surgery could be in charge of my surgery and simply repair the site by doing an incisional flap and keep the pump in place. However, when the plastic surgeon examined the area on my incision where the hole was, he noticed there was drainage and it was determined that repairing it was no longer an option and the pump could not be saved. The potential of bacteria entering the site is not one we want to risk as an infection in there could go directly in my spine and cause bacterial meningitis.

I was then put on antibiotics as a preventative measure (vancomycin, everyone’s favorite!). In addition, I am now taking oral baclofen so I don’t go into withdrawal as we decrease my intrathecal baclofen dose and eventually take the pump out. The plan is that I will be discharged on Monday and continue to ween down my dosage of baclofen at home until I have surgery a week later. Anything that I’m having done inpatient right (IV antibiotics and intrathecal baclofen dosage weening down) can be done at home, and for that, we are lucky. Why stay here when what needs to happen can happen in Duluth? I will need to go to the clinic everyday to decrease my pump dose, but that’s okay. My bed is much comfier than the bed I have here, and I’m sure my mom would agree that she prefers her own bed to the pull-out chair she’s using here.

Until Monday rolls around, my mom and I are just hanging out in my hospital room. Vancomycin – the antibiotic I’m receiving – makes me very warm, flushed, and itchy (it’s called red man’s syndrome apparently), but thankfully 50 milligrams of Benadryl helps with that (albeit making me very sleepy). I’m also on oral baclofen to both minimize withdrawal symptoms and help with my spasticity, as the intrathecal baclofen does. Unfortunately, the oral baclofen passes through my liver and acts similar to Valium, so I’ve been even more tired and a little goofy and out of it. For this reason, I most likely will not be back to school this week as I’m a bit loopier than I normally am and this would affect my ability to perform well in school.

November is the month of thanks, and I see many people posting on Facebook about what they’re thankful for. So, while I’m really upset that my intrathecal baclofebn pump is going to have to be removed (could you say, then, that I’m not pumped?), I’m thankful that we hopefully caught this potential infection before it caused any issues. I’m also thankful that I’m able  to have oral baclofen, as I definitely don’t want to go into baclofen withdrawal (plus, hopefully it will at least help my spasticity a little).

I’m thankful that the recreational therapist lent me this computer to use until I go home. This way, I’m able to connect with the world, do some schoolwork if I’m feeling well enough, and distract me from everything that’s happening in the hospital. I was shocked that my mom forgot my laptop at home and I think that the withdrawal symptoms I was feeling while I was away from the Internet are almost comparable to baclofen withdrawal symptoms. Okay, so maybe that’s a little (fine, a lot) dramatic, but you get my point.

Finally, I’m thankful that there is potentially a chance that someday I will be able to have another baclofen pump placed in the future. I’ve had one for the last 13 years and it has dramatically impacted my quality of life in a positive way. While my pumps and I have a love hate relationship, I am definitely grateful that medicine has advanced enough for people like myself to have a more comfortable life thanks to things like the baclofen pump.

I will update this blog as more information becomes available to us. I will most likely post an update after my pump is removed next week as well.

For now, this is all the information I have to share with you, world. It is our hope that someday, I will be able to have a new baclofen pump implanted. I look forward to the day that I can post a blog entry telling you all that the hope became a reality.

I need to be patient and wait, because it can’t get a new intrathecal baclofen pump now. I will just have to wait to share that news with you at a later time. You know, a time When I’m Better.

Paper, Plastic, or Poop?

When I first started this blog, my plan was to update everyone on my health and life after the traumatic event in February. I knew that this would be the best way for me to spread the same information to many people. Whether you’re in Duluth, across the state, country, or as far away as I know some of you are in Australia, thank you for reading. After my first blog post went live, I was shocked by how many people spread the word about When I’m Better, so thank you for that as well.

I know I told you in my first post that I would do my best to shorten the lengths of all future blog posts, so I apologize in advance that I haven’t had the time to update you all as frequently as I’d like and these posts may be lengthy. That being said, between my summer history class and just plain old busy life schedule, I still plan to keep When I’m Better active and updated more frequently. What I post here will likely be about my medical adventures, but it is not limited to that. When I’m Better is not a blog about being sick. It is a blog about living life, overcoming obstacles, getting better, and just living life to its fullest. Its goal is to educate, entertain, and be a source of fun and stories despite sometimes difficult circumstances.

On June 13th, 2013, I had surgery to have a gastrostomy placed. In addition to that, the doctor was going to look around and see if the intestine that remained was still healthy. During surgery, they determined that another 2.5 feet of small intestine needed to be removed. This surgery left me with about four feet of small intestine left when the average person has about 24 feet. I also had a colostomy done. That is what this post is about.

Ostomies are done for many different diseases and conditions. Sometimes an ostomy is only needed for a short time, but for some people it is life-long. My ostomy is a colostomy.

A colostomy is an opening in the abdominal wall that is made during surgery. The end of the large intestine is brought through the opening to form a stoma. After a colostomy has been created, that stoma is now the exit for stool. This means, that I need to wear a special bag that sticks to the stoma on my stomach. The bag catches the stool, which I can empty as needed. The reason I have one is because I am missing a large amount of my small intestine. Due to this, I would have to use the bathroom several times a day, especially very quickly after I eat. My colostomy allows me to go about my day not having to worry about rushing to the bathroom. Although it takes some getting used to, I think it will be better for me in the long run.

I want you all to know that you will not be able to see the bag, so you don’t need to worry. There will be nothing gross or apparent to you. In fact, some people do not wish to tell people they have an ostomy, and therefore, no one knows that they do.

However, I am choosing to tell you all as a part of When I’m Better, so that I do not have to explain myself if you do happen to find out. The stoma has no valve or shut-off muscle. This means that I will not be able to control the passage of stool (or gases) from the stoma.

Yep, you guessed it. It’s loud at times. While this is guaranteed to be embarrassing in the future, it’s something that I’ve been able to start ignoring, and eventually, everyone around me will be able to do the same. I mean, the average person passes gas 15 times a day, so you can’t say that you don’t either. So if I do, just let it go.

And the best part? It all goes in a bag, so even if my ostomy is having a “noisy day,” you won’t be able to smell it. So go ahead, blame your daily gassiness on me. I won’t care, I’ll blame the bag.

But just know, if you try to blame a smelly one on me, there’s no chance it was me, and well…you’re on your own there. ;)


An Update

I apologize for not updating this blog more often. Between my health, the online history class I’m taking, and the plain old fact that it’s summer, I haven’t had much time to write a blog post. Now, that’s not to say that I don’t have anything to talk about: I definitely do have some things I’d like to share, and I will, as soon as I am able to find the time to sit down and write until I’m finished.

As for a quick update, I am having a procedure tomorrow which should just be a day surgery. Expect to hear more from me tomorrow night or Friday.

Until then, try not to melt from the heat.

The Beginning

Hello, Internet. My name is Michael Jackson. No, I’m not the King of Pop, but I am the guy who wrote this blog on the Huffington Post. I am not the one who wrote all the books about alcohol, but I am the one who likes to make people laugh,

I am also the one who hasn’t had a meal in almost five months.

For most of you out there, that’s hard to believe, but let me start at the beginning. First off, I will warn you that this blog post is long. Please bear with me: I promise all future posts will be more condensed.

Welcome to my blog. As of this post, I am 19 years old and am going into my second year of college, where I am studying psychology. I am also contemplating a minor in communication, but we’ll see how that goes. I’m from Duluth, Minnesota and that is where I live with my parents and religiously DVR episodes of The Ellen DeGeneres Show. Oh, by the way, this is a picture of me.

I look like your average, every day nineteen year old, don’t I? Well, my life is far from “average” and I am anything but “normal”. I have spastic quadriplegic cerebral palsy and I spend most of my time in a wheelchair. I have had over 65 surgeries and have spent many of my days on Earth in the hospital. For more on all that, please read my Huffington Post blog as that story isn’t why this blog exists.

I created this blog because of what happened to me during the early morning hours of February 21, 2013. Around 1 AM that night, I was studying for a Spanish test and began to get some abdominal pain. I had been having abdominal pain, nausea, and vomiting fairly regularly for the last two and a half years, so this was pretty normal for me. The cure, as always, was simply to lay down flat – the pain and nausea almost always went away when I did that, or at least got much better. I finished up my study session and went to bed. Soon, I realized that the pain wasn’t subsiding; in fact, I was starting to vomit as well – and the pain was getting worse. It just felt…different.  I asked my dad to wake my mom up and the three of us immediately went to the emergency room.

By 3:30 that morning, the doctors placed a nasogastric tube in me and I had a CAT scan. It was determined that I had an obstruction or blockage of some sort. The plan was to leave me connected to the NG and suction with the hope of decompressing the obstruction. However, by the evening of the 21st, it was determined that that plan wouldn’t work and ultimately, I would need surgery.

On the morning of the 22nd, I went by ambulance to Minneapolis Children’s. By the time I arrived, I was in septic shock and had almost no blood pressure. They didn’t know if I was going to make it. I was rushed to the operating room where 1/3 of my small intestine was dead and 1/3 was questionable. The 1/3 that had died was removed at this time. Since 1/3 of it was questionable, my doctors were unsure if it would need to be removed. Because of this, they kept my incision open and put me on a respirator, as well as many medications to support my blood pressure and heart rate. Three days later, when I was a little more stable, I was brought back to surgery to check on whether or not the questionable third “pinked up” or not. It had, all but 10 centimeters of it, which was then removed. They closed me up.

Following the surgeries, I was on the respirator for another week. After being in the hospital for a period of a month, we realized that my intestines were not going to function properly at that time. I went home on TPN after having a port placed in my chest and an unsuccessful attempt to place a gastrostomy tube. It was then I received news that I never wanted to hear: I wasn’t going to be able to eat or drink for a good two to three months. I cried for a few minutes when I found this out, realizing that I wouldn’t be able to have our family friend Greg’s ribs for my birthday.

Hey, you’d cry too if you didn’t get his ribs. They’re amazing.

Food is such an important of our everyday life. It’s amazing how much our lives revolve around it. We blog about it, we talk about it, we photograph it, we even watch shows about it. Food is the celebrity everyone knows and loves, but it’s more than that: it’s social, it’s cultural, it’s enjoyable, and it’s essential. When you want to meet up with a friend, where do you go? A restaurant. Going to the movies? Stop by the concession stand! Food is everywhere we are, everyday.

At first, the fact that I couldn’t have anything to eat or drink was the hardest thing to deal with. People ask me all the time, “how do you do it?” They ask me how I deal with not being able to eat, about how I deal with being sick a lot, in the hospital, or in a wheelchair. Well, I don’t know how. I just do. This is my life. And yes, it does go on.

I try to make the best of every hand I’m dealt.

One day, shortly after getting home from the hospital, my mom brought me shopping with her. And if that’s not bad enough, guess where she brought me. That’s right: the grocery store.

The first few minutes inside there was like being locked in a prison cell. The fresh baked bread, the ice cream aisle, the offers of free samples from overly-friendly staff members – it was all too much to handle. That was, until I started all the mental lists of all the foods I want to eat in my future.

“Mom, I want to try these chips when I’m better.”

“Let’s get these when I’m better.”

“I want this when I’m better.”

When I’m Better.

The blog.