Category: Illness

Air

When I was in college I took a music appreciation class. I’ve always loved music. This class gave me an opportunity to explore various genres of music. For instance, we listened to quite a lot of classical music. Through this experience I gained an appreciation for the classical composer, Johann Sebastian Bach. One piece in particular of his that I enjoy is “Air on the G String.”

I heard this particular piece a couple of weeks ago. Since that day “air” is something that has taken on a quite a particular significance. That same day Our Little Fighter was airlifted from our local hospital to one over an hour away. He has a virus that led to an infection in his lung. Our house is just a couple of blocks from our local hospital. I heard the helicopter land and take off as it carried Our Little Fighter away into a world of uncertainty.

A brief time after the helicopter departed, an eagle appeared high in the sky. It circled our house a couple of times and then flew north. I was reminded of Isaiah 40:31, “But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint” (ESV). These are words that I have had to keep coming back to, especially since progress seems to be slow.

This past week, while Amanda has been keeping watch over Our Little Fighter at the hospital, I have been home with Little Boy. He has been keeping me entertained. This morning he put his fork behind my back during breakfast, proceeded to sit back down, then with a puzzled grin asked me where his fork was. Usually we play this game where he hides behind me and then I ask where he has gone. He will peek around my shoulder and say, “here I am.” Apparently, he is building his comedy chops. I love every minute of it.

We will wait upon the Lord, as He is the source of our true strength. No matter where life leads, God is in control. We will keep trusting Him to provide strength in our weariness. He already is doing so through the humor of a little boy. I am just hoping there are no forks in my bed tonight.

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Punching Clouds

There are times when words or phrases I hear will get stuck in my mind. For instance, the other day I was listening to one of my favorite podcasts and the host used the phrase “willful incontinence.” The twelve-year-old boy that is still inside of me got a good laugh from that. My mind instantly began to wonder how I could work that into a blog post. My mission has been accomplished! But seriously, that is not what this post is about.

I’d like to share another phrase that came to me today as I was watching Our Little Fighter play on the floor. He has a little mat that he can lay on that has various age-appropriate toys suspended overhead. One of these items is a cloud with eyes. As I was watching Our Little Fighter, he reached up and “punched” the cloud. He reminded me of a boxer using a punching bag while in training. Furthermore, it reminded me that I too have a few of my own “clouds” that need a good thrashing.

Those of you who read my blog on a regular basis know I have been battling some health problems lately. With these have come some dark mental clouds. However, I am a fighter too.

I just needed a reminder to keep “punching” the clouds. They are small compared to the good things in life. You just need to have a childlike faith. I’m fortunate to have reminders of that on a daily basis.

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Indestructible

The other day someone told me that they thought I looked like Superman. I must be honest, I did feel flattered. Superman has always been my favorite superhero. I’d love to be “faster than a speeding bullet,” and “more powerful than a locomotive. Likewise, I’d love be able “to leap tall buildings in a single bound.” However, the best part about being Superman is that I would be indestructible.

The older we get the more fragile we tend to become. My disabled body is more susceptible to the ravages of time and place. For instance, I am currently dealing with a wound on my foot. This has been a chronic issue for at least the last ten years. Having no feeling below my knees is perhaps one of the most challenging aspects of having spina bifida. Indestructible, I am not. I am no “Man of Steel.” This is probably just as well, as I’d probably not look very good in tights or a cape.

If you could be a superhero, who would you be? What superpowers would you like to have? Leave me a comment and let me know. I am off to defeat the hunger pangs of a snorting infant. That is one superpower that I do seem to have these days.

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Peace of Mind

This week has been particularly challenging. Monday was fine. However, on Tuesday things got turned upside down a bit. Our Little Fighter went to the pediatrician to get some routine immunizations. When I came home from work on Tuesday, he was pretty lethargic and was quite warm.

After feeding him a bottle around 5:30, he turned an ashen gray and started having trouble breathing. Amanda rushed out the door with him and took him to the ER. I followed soon after. Thankfully, my mom was at our house so she could watch Baby Boy.

It was difficult to watch all of the poking and prodding being done to Our Little Fighter, as they began to run tests on him in the ER. I was wishing I could take his place with all of the needle pokes to his tiny body. I now can empathize with my parents who spent countless hours with me in the hospital when I was younger. It is frightening when something is happening over which you have no control.

Once all of the testing was done, acute respiratory distress was the diagnosis. However, we have no idea why it happened. Children born with trisomy 18 can have respiratory problems that can lead to sudden death. Therefore, Our Little Fighter was sent to OSF Children’s Hospital in Peoria for observation on Tuesday night. Fortunately, he was able to come home on Wednesday evening. However, we still don’t have any real answers.

Yesterday, he did fine here at home. Today, he seems to be doing better still. However, there is now always going to be a question as to if and when he will stop breathing again. Pray for peace of mind for all of us.

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Ruh-Roh Raggy

When I was a young boy I’d get up early on Saturday mornings, grab a pillow and a blanket. Then I would make my way to the living room to turn on the TV. I loved Saturday morning cartoons. Some of my favorites included Scooby Doo, Transformers, G.I. Joe, Teenage Mutant Ninja Turtles, and Richie Rich. This was escapism at its best. Nothing to do and nowhere to go except to help Scooby, Shaggy, Fred, Velma, and Daphne solve another mystery. Those “meddling kids” knew how to entertain. The cartoons of today just don’t have the same substance. In fact, many of them just leave me with more questions than answers.

Having a toddler in the house has led us to new places such as Adventure Bay, where Ryder and his team of pups known as the Paw Patrol live. Adventure Bay seems like a great place to live until you realize their police force consists of a team of dogs led by a little boy. Oh yes, they are all quite capable and are very well equipped. In fact, they are probably the best equipped fighting force in the world, except for the United States military. Which leads me to wonder, who is funding the Paw Patrol?

This team of crime-fighting pups has a plethora of vehicles, tools, and equipment. The people of Adventure Bay must pay some pretty hefty taxes. It is a good thing Ryder and the Paw Patrol are always there to save the day, as this town has a pretty inept mayor. Mayor Goodway and her pet hen, Chickaletta probably should be removed from office. Which begs the question, why haven’t Ryder and the Paw Patrol staged a coup against the mayor? Perhaps, the Scooby-Doo crew could pile into the Mystery Machine and head down to Adventure Bay to solve this puzzling mystery. After this, they could help me answer some further questions, such as why is Baby Shark so popular?

Sure, Baby Shark has a catchy tune, but it has no other redeeming qualities. According Wikipedia, this cartoon originated “as a campfire song,” which went viral after “a South Korean entertainment company, released a version of the song with a YouTube music video” in 2016. It has since morphed into other videos featuring Baby Shark and his friend Pinkfong, who is a pink fox.

I cannot tell you how many times I have seen the full-length feature “film,” Baby Shark’s Space Adventure. This is the tall tale of Baby Shark and Pinkfong losing their way as they both travel back to their home planets. Along the way they visit other planets, where Baby Shark inexplicably glides through the air. How does Baby Shark survive out of the water? Furthermore, how did a land creature (Pinkfong) and an ocean-dwelling creature (Baby Shark) become such good friends? Moreover, why are they travelling the galaxy together? So many questions, no real answers. Which brings me back to my original point. Today’s cartoons have little to no substance. For instance, they provide no origin stories.

I know how The Teenage Mutant Ninja Turtles gained the ability to practice martial arts, because this was explained in the cartoons and the comic books. Likewise, I know how G.I. Joe became a soldier because, again, we were given a backstory. Today’s cartoons are mostly style over substance, which is in large part a reflection of culture in America. I want to go back to 1984 for a minute, maybe I can catch a ride in the Mystery Machine. Does anyone have Scooby-Doo’s cell phone number?

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Six Weeks

Yesterday was my last dose of antibiotics. This was cause for celebration. It has been a long six weeks of medication, home nursing visits, doctor’s appointments, and sleepless nights. There were times it seemed like it would never end.

However, my body has healed. My PICC line has been removed, and life is slowly getting back to normal. Now it is time to once again build up my strength. My body has become very weak, as I have been quite inactive. Working from home has not helped this situation. Despite this, I am thankful to have a good job. Likewise, I am thankful that my body has healed.

I am curious to see what the next few months will bring as we head into autumn. There is a lot to look forward to, especially with Baby Boy here. For instance, Halloween should be fun with a little one. Thanksgiving and Christmas will be extra special as well. Hopefully, 2021 will be a better year for us all. I know I am ready to say goodbye to 2020!

My parasitic PICC line. It felt like a worm slithering through my vein as it was removed from my arm.
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Drip, Drip, Drip…

I seem to be living life one drip at a time these days. Four weeks in to being on IV antibiotics and progress is being made, despite the drip, drip, of time. The wound on my foot has healed, for the most part. However, there are still two weeks of antibiotics to go.

I am dreaming of the day when the PICC line will be pulled from my arm. If all goes as planned this should happen the week of September 21. After that I hope things will get back to normal.

In the time I have been down, Baby Boy has begun to crawl. This has presented some challenges, as I cannot always catch him before he gets his hands in to things where they don’t belong. For instance, he has sampled some cat food, explored the bathroom floor, and played with television remotes. I am hoping he hasn’t purchaed anything from Amazon while I wasn’t looking.

The next two weeks will drip, drip, drip on by and my left foot and my left arm will once again be fully operational. I can then be on full-time baby patrol every evening. I’m sure the cats will appreciate that. I know Amanda will, as she has been working overtime keeping our household running. Without her I’d be lost. She has been wife, mother, nurse, housekeeper, chauffeur, and friend all while holding down a full-time job.

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Doctoring in the Time of COVID

Going to the doctor in 2020 feels more like how going to the airport used to feel when we still went places. You check in and are “wanded” across the forehead so that your temperature can be checked. Fortunately, mine has been holding steady at 98.7 degrees or so. You are then “interrogated” about your health, with whom you’ve been in contact, if you experienced body aches or chills recently, and then you are allowed to pass through to your “gate.”

I think I might just get a t-shirt made that has my full name and date of birth printed on it so that I can just point to the front as they take me in for yet another test. Today, it was an ultrasound on my neck and arm to check for a blood clot. The area around the entrance to the PICC line that I had inserted into my arm a few weeks ago looked suspicious to my home nurse as she visited today. Therefore, I was sent to see my doctor, who at first thought I had an infection in the line. However, as noted above, it turned out to be a blood clot. Fortunately, it is was not a clot that tends to cause any problems.

So, tonight I find a pressure bandage around my right arm. Warm compresses will be used as I climb into bed. Then tomorrow another PICC line will be placed in the opposite arm so that I can continue to receive my daily dose of antibiotics. I sometimes wonder if all of this is real. Each week of 2020 just seems to get more odd.

Amanda got a flat tire this past Friday. I layed on my glasses last night in bed, which bent the frame and popped out a lens, then news of a blood clot in my arm today just seemed to be the icing on the cake.

I think tomorrow when I go in for my procedure, I’ll pretend like I truly am at the airport. I’ll check my bags, and ask for a glass of champagne as I take my seat in first class, then I’ll recline my seat and drift off to sleep. Perhaps, when I wake up it will be 2021. Then again, I’ll probably just be asked, “what is your full name and date of birth?”

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The Eye of the Tiger

Do you ever feel as if you have no fight left within you? Living life in a disabled body, especially when that body breaks down is overwhelming. I have been luckier than most in my life. My independence has not been as limited as others who are disabled. However, the past few weeks has left me feeling like I am down for the count.

Battling a bone infection is tough work. I’ve actually done it a few times in my life. It saps your energy. Being treated with heavy doses of antibiotics is not pleasant, as these drugs often kill the normal bacteria that grows within your gastrointestinal system. This often leads to unpleasant side effects for your bowels. Fortunately, there are probiotics that can reverse these side effects.

Struggling with physical ailments typically increases the anxiety, which often bombards my mind. Usually, my first reaction is to get frustrated, which leads to anger. I often question God why He allows suffering of any kind. I think sometimes it is a way of getting our attention when we are stubborn. This is especially true in my case. I am a very stubborn person, who often refuses to listen to others.

My stubborness led me to avoid treatment for a wound on my foot, which then became infected. This infection then entered my blood and bone, which if it had not been caught in time, could have killed me. This realization has been frightening. According to my doctor, I am still not out of the woods. I will be on IV antibiotics for the next 4 to 6 weeks.

Some days are better than others. Frankly, I feel like a boxer who has been knocked down one too many times. How much more do I have left to give? This is a question I have pondered lately. My body is tired. My mind is exhausted. My nerves are frayed. However, I am not ready to quit.

I came across a story tonight about a little girl who is in the hospital fighting for her life. She has multiple IV tubes running into her neck, which are delivering heavy doses of antibiotics to her body. I pray that this little girl has a lot of fight left within her. What I am battling is minor compared to what she is facing.

One of my favorite movies is Rocky IV. It is essentially a David vs. Goliath story, where a much smaller, slower fighter is tasked with defeating a giant, genetically engineered monster. Just before the final fight sequence begins this behemoth leans down into Rocky’s face and says, “I must break you.” I feel as if that is what this infection has said to me.

However, much like Rocky, I have the will to win. I am bruised and bloodied, but no one is going to throw in the towel. I have plenty of people in my corner, many of whom I know are praying for me. This giant will be defeated. Can you hear the opening chords to “Eye of the Tiger” yet?

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The Trash Bag Ladybug Monster

God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.

I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.

For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.

Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.

After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.

Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.

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