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.

PICC Your Poison

Coming home from the hospital always does a body good. I slept last night better than I have in weeks. That is despite the Peripherally Inserted Central Catheter or PICC sticking out of my arm. This is the line through which I’ll receive a daily dose of antibiotics through September 21, that is if things go to plan.

This is not the first time I have had a PICC, however, I am hoping it is my last. It is fascinating to watch a PICC line being inserted. An ultrasound machine is used to find an appropriate vein. Then through the use of ultrasound imaging the catheter is guided up through the vein until it reaches a point just above the heart.

The next several weeks will be filled with follow-up appointments with doctors. I’m also going to attempt to return to work here at home. It is going to be an uphill battle, but I have a great partner with whom to fight. Without my wife Amanda I would not be able to get through my days.

I am hoping my body responds to treatment as it should. The sooner all of this is in the rearview mirror, the better. I’ll be praying for strength and endurance for both Amanda and I. Likewise, I’ll be praying for healing. My body is weak, and my mind is weary. However, I know this too shall pass.

I am thankful to have such a wonderful family and group of friends who are willing to help wherever it is needed. I’d appreciate your prayers through this trying time.

What is There to Fear?

If you read my last blog post you know I have been struggling physically the last few days. I thought things were looking up until I went for a follow up with primary care doctor today. The infection in my foot appeared to be getting better. However, upon closer examination the wound on my foot had a sneaky, little hole that was leading down to my bone. Through this hole poured some of the infection. What this means is yet another surgery tomorrow.

As I have gotten older I have begun to question just how much more my body can withstand. I’ve had over 30 procedures done in the 43 years I have been alive. It seems there isn’t a part of my body that has been left unscathed by a surgeon’s scalpel. I have seen large chunks of flesh removed from my body, my head has been shaved bald, and I’ve had muscles removed from one part of my body and transferred to another spot.

I’ve had some great doctors. I have also had some fairly incompetent ones. The nurses, on the other hand, have all been terrific. They are the ones who really know what is happening. I’ll ask a nurse something before I ask any doctor. A nurse, even if they don’t know the answer, can usually do some investigative work and get you the information you need. Plus, they clean up all of the messes!

I don’t mind having surgery. It is nothing that scares me. I’m confident in the doctor who is performing the surgery, so I know I am in capable hands. There are great nurses around as well. Likewise, I know prayers are already being spoken for me. Therefore, it is in God’s hands. What is there to fear? I just hope they ask me what kind of music I want to listen to as I drift off to sleep!

P.S. I had my first test for COVID-19 today. It felt like someone shot onion juice up into my sinuses, as my nostrils begin to sting and my eyes began to water! After that I feel like I can face anything.

Spina Bifida Blues

Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I think it is safe to say that most, if not all of us feel down at times. What do you do when you feel like this? I have to be honest, there have been many times when I have felt despair. This despair is something that has made me feel alone. I have been afraid to share my true feelings, even with those closest to me.

Some of this has been brought about by my feelings of inferiority, which I have touched upon in previous posts. I often feel as if I am not good enough for anything or anyone. These feelings often lead me to doubt myself in almost every facet of life. Many days I go to work worrying that I am going to “screw up” or forget to do something.  I believe one of the things that has fueled these feelings of insecurity is that others have often “talked down” to me as if I am too stupid to communicate just like anyone other person.  My legs don’t work correctly, but my brain functions pretty well.  Just don’t ask me to do math! 

This doubt can be paralyzing. Fortunately, I have reached out to others who have helped me begin to see myself in a more positive light.  Counseling has shown me that I do have things I can contribute to society.  It has been a positive experience sharing my doubts and insecurities in a therapeutic setting.   

Writing this blog has also been a cathartic experience, as it has helped me unleash some of the “demons” that rule my thoughts.  Likewise, the power of prayer has also been very instrumental in helping me get over some of these irrational fears.  I must be honest there have been many times that I have lashed out at God for “placing” me in this body.  

Humor is always good medicine as well.  I have learned over the years that you have to laugh at the circumstances of life.  This helps one move past the bad and appreciate the good things that life has to offer.  I wish I could go back and tell my younger self to shut out the negative thoughts and focus only on the good.  That is a lesson that I am just now learning as a 42 year old man.   

Finally, it is important to keep active.  Now that the weather here in Illinois is getting warmer, I will be outside cycling away my blues.  

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