Sepsis: A Bloody Nightmare
Ports-can’t live with them, can’t live without them! A port-a-catheter is a device that is usually placed under the skin. It is attached to a catheter (a thin, flexible tube) that is threaded into a large vein above the right side of the heart. When hemophiliacs are young, “ports” are used to give parents easy access to their children’s veins so they can easily infuse them with their clotting medicine, “factor”. Unfortunately having a foreign device in your body has risks, mainly sepsis. Sepsis is the result of a bacteria being introduced into your blood stream and can lead to septic shock. Septic shock causes a drastic drop in blood pressure which can cause our organs to shut down; without immediate medical treatment it has the potential to be fatal. As if people with bleeding disorders did not have enough to worry about.
Tyler got his first implanted port at seven months. It was a life saver when it came to infusions; infusing a baby or toddler at home peripherally would have been extremely difficult. A port brought freedom and independence for us. No more running to the ER for infusions. Best thing ever I thought!
For years we had no issues with port infections. As an inhibitor patient, Tyler was infused often. At five years old, he had his first port infection. It was pretty uneventful. He developed a fever so we went to the ER for a culture. The test came back positive so he was hospitalized for a round of IV antibiotics. This occurred several times over the next two years which resulted in the loss of two implanted port-a-caths.
Our last bout of sepsis was the worst and concluded our catheter journey. Tyler was seven and he had a Broviac catheter which consisted of a tube that ran inside the vena cava and hung outside his chest. There is a special valve at the end so you aren’t spewing blood. (He had a Broviac line because we had him on a 24/7 constant drip of factor to get rid of his inhibitor and his allergy to Factor 9.) One day, while walking into Target he started to shake like he was cold. We live in Arizona so I knew he was NOT cold in July! I took him to the car to call the HTC. Surprisingly I found a thermometer in my purse. Clearly the most prepared I have ever been in my life. It read 101 degrees. Off to the ER stat!
I called our HTC nurse to let her know we were heading over. It was about 40 minutes away. As I was driving, I checked his temp again. It read 103 degrees; I drove faster. The nurse talked to me the whole time I was driving periodically asking, “So what is he doing now?” I would look to the back seat and report his declining appearance. Eventually I replied, “He’s napping now”, thinking he was just sleepy due to the high fever.
By the time we arrived at the hospital, Tyler’s fever was 107 degrees and he was unconscious. Scariest day of my life! Wait, I think I said that about a couple of other events. Okay, so ONE of the scariest days of my life. Tyler was rushed to the ICU and pumped with antibiotics and fluids. The chills he had experienced were due to the infection hitting his blood stream, sending the body into septic shock. At this point, the body will either slowly start to respond to the antibiotics or start to shut down. Thank goodness it was not the latter.
After this experience, I decided no more catheters. At the time it was a very easy decision. Had this happened when he was a toddler, I would have really been conflicted; however, I know I would have ultimately made the same decision. Parents often blame themselves when their child gets a port infection. I questioned myself wondering if I was to blame. I knew I was very strict about maintaining a sterile environment/process. When you infuse daily, and sometimes multiple times a day like many inhibitor patients, the odds are against you and eventually it may happen. I am still a supporter of ports for young kids. My only advice would be to remain diligent. When fevers come, notify your doctor. Educate yourself on the symptoms of sepsis. Remember not to ever think you are overreacting when concerned about a fever. You never know if it really IS a cold summer day in Arizona or actually a bloody nightmare knocking at your door.
*PICTURE ABOVE: My sister, Jill, and her favorite nephew, Tyler!
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