A Day in the Life: Short Bowel Syndrome and Infections

Exploring line infections, a prevalent complication of short bowel syndrome, and a glimpse into a typical day for a caregiver mom.

Photo Credit - American Society for Parenteral and Enteral Nutrition

When it comes to a child diagnosed with short bowel syndrome, the management of their nutritional needs often necessitates the use of a Broviac line, which is a type of central venous catheter. This line allows for the administration of Total Parenteral Nutrition (TPN) and lipids, essential components for sustaining the child's growth and development when their gastrointestinal tract is unable to absorb nutrients effectively. However, the reliance on such a device brings with it a host of potential complications, with line infections being a particularly significant concern.

Line infections can be a daunting challenge for caregivers and healthcare providers alike, as they can occur unexpectedly, even with stringent adherence to sterile techniques. These infections are not merely inconveniences; they pose a serious risk to the health and well-being of the child, potentially leading to severe complications such as sepsis, which is a life-threatening response to infection that can result in organ failure. The stakes are high, and thus, our primary goal is to implement robust strategies that not only aim to prevent these infections but also minimize their occurrence to the greatest extent possible.

The mechanisms behind these infections are typically linked to two main factors: accidental contamination during the handling of the Broviac line and bacterial migration along the catheter path. Accidental contamination can occur during routine maintenance procedures, such as changing dressings or accessing the line for medication or nutrition administration. Even with the best practices in place, the risk of introducing pathogens into the bloodstream remains a concern, especially in a pediatric population whose immune systems may be compromised.

Bacterial migration, on the other hand, refers to the movement of bacteria from the skin surface or other external sources into the bloodstream through the catheter. This can happen when the integrity of the line is compromised or if there are breaches in the sterile technique during line care. Understanding these pathways of infection is crucial for developing effective prevention strategies.

To mitigate the risk of line infections, it is imperative to use proper techniques for handling the Broviac line. This involves comprehensive hand hygiene practices, the use of suitable personal protective equipment like gloves and face masks, and following aseptic techniques, which in our situation include the use of chlorhexidine and alcohol during all interactions with the line. Regular monitoring and assessment of the site where the catheter enters the body are also essential, as any signs of redness, swelling, or discharge may indicate an impending infection that requires immediate intervention.

Additionally, utilizing a multidisciplinary approach involving my son's GI specialist, home-health nurses, pediatrician, and, when necessary, wound care specialists and surgeons, improves the quality of care offered. Regular follow-ups and assessments can help identify potential issues early, allowing for timely adjustments to the care plan. Additionally, I administer ethanol locks in his line twice per week and he takes an antimicrobial medication called metronidazole for seven days each month via his G-tube as a preventive antibiotic to further reduce the risk of infection.

Infection Risk Protocol

I monitor my son's condition and overall demeanor regularly, checking for any signs of a fever or odd changes in behavior throughout each day. This vigilance is crucial, as even the slightest change can indicate a potential health issue that requires immediate attention. I remain attentive to his energy levels, appetite, and mood, as well as any unusual symptoms that might arise. If there are any concerns, I take his temperature to ensure that he is within a safe range. We have established a threshold of 100.3 degrees Fahrenheit; if his temperature reaches or exceeds this mark, we are prepared to act swiftly.

To facilitate our quick response, we keep a hospital bag ready to go at all times. This bag is meticulously packed with essential items such as his medical records, comfort items like his favorite blanket and toys, and toiletries. The preparedness allows us to minimize stress during what can be a very tense situation. As soon as we detect a fever of 100.3 or higher, we immediately take him to the hospital for a full evaluation. Upon arrival, he undergoes a series of assessments, including blood work and continuous monitoring to ascertain the underlying cause of the fever.

Anytime he has a fever, he is typically admitted to the hospital. During this time, blood cultures are taken to monitor for any bacterial growth, which is critical in determining the appropriate course of treatment. The hospital staff closely observes him, and if an infection is confirmed, we usually find ourselves staying in the hospital for an extended period, often up to two weeks. During this hospitalization, he receives IV antibiotic treatment tailored to combat the specific infection identified in his blood cultures. The medical team is diligent in adjusting his treatment as needed based on his response to the antibiotics.

Once we receive the green light to return home, the journey does not end there. He continues an in-home IV antibiotic treatment plan, which I administer via his Broviac line. This line is a vital part of his care, allowing for direct access to his bloodstream and ensuring that he receives the necessary medications effectively. The in-home treatment typically lasts for an additional ten to fourteen days, during which I monitor him closely for any side effects or signs of complications from the antibiotics. This ongoing vigilance is essential as we work to ensure his health and prevent any further infections while providing him with the comfort and support he needs during his recovery.

General Daily Schedule During IV Antibiotics Treatment

TIME	ACTIVITY
12:30 AM	Wash and sanitize hands and put on gloves. Clean Broviac line extension with chlorhexidine and alcohol. Hook up and administer IV antibiotics.
1:00 AM	Wash and sanitize hands and put on gloves. Unhook IV antibiotics. Clean Broviac line extension with chlorhexidine and alcohol. Flush Broviac line extension with saline and secure. Set out antibiotic for next dose to bring to room temperature.
2:00 AM	Change soiled diaper (my son usually has a bowel movement at this time). Clean and sanitize bed and change any linens if soiled. Wash and sanitize hands.
2:30 AM - 5:00 AM	Sleep/Rest as much as possible.
5:00 AM	Wake up and pray. Wash and sanitize hands. Check for fever and breathing pattern. Replace ReliZorb cartridge on feeding line. Fill formula bag with fresh formula for a new 4-hour run. Prime the feeding line and reconnect to G-tube extension. Restart feeding pump. Prep and administer early morning medication via G-tube extension and flush with filtered water.
6:00 AM	Coffee time! Meditation/Prayer.
6:20 AM	Wash and sanitize hands and put on gloves. Clean Broviac line extension with chlorhexidine and alcohol. Hook up and administer IV antibiotics.
6:30 AM	Pay bills, order groceries, make lists of things I need to do for the day and any phone calls/appointments I need to make.
7:00 AM	Once TPN/Lipids are finished, power off pump(s) and charge. Wash and sanitize hands and put on gloves. Unhook IV antibiotics. Clean Broviac line extension with chlorhexidine and alcohol. Flush Broviac line extension with saline. Unhook Broviac line extension and clean Broviac line with chlorhexidine and alcohol. Flush Broviac line with saline, lock with heparin, and secure line. Set out antibiotic for next dose to bring to room temperature.
7:30 AM	Take a shower and brush my teeth, if my son is still asleep (otherwise, I brush my teeth after I get him going and then take a shower during his nap time).
8:00 AM	Wake my son, if he hasn't on his own. Change soiled diaper and give sponge bath (he is unable to take regular baths because of his Broviac line, and his bandage is not waterproof, bathing can jeopardize both his line and bandage). Comb his hair, get him dressed and put on his compression vest. The compression vest protects his bandage and his line from him pulling on it and scratching it. Place feeding pump, tubing, and formula bag inside G-tube backpack and put it on him. Turn on cartoons (Mickey Mouse is a must in the morning). Clean and sanitize bed and change all linens and pillows. Wash and sanitize hands.
9:00 AM	Change soiled diaper. Change clothing if needed. Wash and sanitize hands. Fill formula bag with fresh formula for a new 4-hour run Prime the feeding line and reconnect to G-tube extension. Restart feeding pump. Prep and administer addition morning medications via G-tube extension and flush with filtered water.
9:30 AM	Breakfast: Try to get him to eat something for breakfast (usually he will refuse and opt for white cheddar cheese puffs and water). My son has severe food aversion due to his condition.
10:00 AM - 12:00 PM	Wash and sanitize hands. Prep and administer final morning medication via G-tube and flush with filtered. Depending on the day, he has a weekly home nurse appointment for a Broviac bandage change and blood work, developmental therapy appointment, occupational therapy appointment or we have play time. Lunch: Plenty of water and white cheddar cheese puffs for lunch and anything else he will try. Change soiled diaper (my son usually has a one or more bowel movements at this time). Change clothing if needed. Wash and sanitize hands.
12:20 PM	Wash and sanitize hands and put on gloves. Clean Broviac line with chlorhexidine and alcohol. Flush Broviac line with saline. Hook up and administer IV antibiotics.
1:00 PM	Wash and sanitize hands and put on gloves. Unhook IV antibiotics. Clean Broviac line with chlorhexidine and alcohol. Flush Broviac line with saline, lock with Ethanol, and secure line. Stop feeding pump for break. Flush G-tube extension with filtered water and disconnect G-tube extension. Ensure G-tube balloon is at optimal water level Clean surrounding site and G-tube button. Replace gauze bandage as needed. Check/change diaper. Change clothing if needed.
1:30 PM - 2:30 PM	Charge feeding pump. Wash and sanitize hands. Set out TPN for the evening to bring to room temperature. Set out antibiotic for next dose to bring to room temperature. Depending on the day, he has a weekly afternoon feeding/speech therapy appointment, or we have play time. Check/change diaper. Change clothing if needed.
2:30 PM - 4:30 PM	If my son does not have an afternoon doctor appointment, he usually is napping at this time. Clean the house, make necessary phone calls. Personal time: write, read, listen to music, or nap if possible.
4:30 PM	Wake my son, if he hasn't on his own. Check/change diaper. Change clothing if needed. Snack and independent play time. Wash and sanitize hands. Gather feeding supplies: fresh feeding bag, new ReliZorb cartridge, new G-tube extension, backpack, and feeding pump.
5:00 PM	Fill formula bag with fresh formula for a new 4-hour run. Prime the feeding line and reconnect to G-tube extension. Restart feeding pump. Prep and administer evening medication via G-tube extension and flush with filtered water. Place feeding pump, tubing, and formula bag inside G-tube backpack and put it on him.
5:30 PM - 6:20 PM	Check/change diaper. Change clothing if needed. Family time, play time, laundry and relaxing.
6:20 PM	Wash and sanitize hands and put on gloves. Clean Broviac line with chlorhexidine and alcohol. Draw out Ethanol lock. Flush Broviac line with saline. Hook up and administer IV antibiotics.
6:30 PM	Wash and sanitize hands. Gather all necessary TPN/Lipids supplies, Gattex injection supplies, and pajamas. Sanitize TPN/Lipids pumps and prep area. Sanitize hands again and put on gloves. Prep and prime TPN/Lipids and get pumps ready to begin. Prep Gattex injection.
7:00 PM	Remove feeding backpack and compression vest. Sanitize hands again and put on fresh gloves. Unhook IV antibiotics. Clean Broviac line with chlorhexidine and alcohol. Flush Broviac line with saline. Hook TPN/Lipids line into Broviac line and start pump(s). Secure lines and G-tube extension. Clean injection site with alcohol and administer Gattex injection before putting on pajamas. Attach feeding pump and bag to TPN/Lipids IV pole. Check/change diaper, if needed.
7:30 PM	Dinner time: We offer whatever we are eating to my son and try to encourage him to at least touch, if not taste the food (usually he will refuse and opt for white cheddar cheese puffs and water).
8:00 PM	Wash and sanitize hands. Set out antibiotic for next dose to bring to room temperature. Gather all supplies needed for early morning. Gather clean bedding and morning outfit. Prep Theseus's bed for the night.
8:30 PM	Cartoons/movie time and winding down for the night.
9:00 PM	Wash and sanitize hands. Fill formula bag with fresh formula for a new 4-hour run. Prime the feeding line and reconnect to G-tube extension. Restart feeding pump.
9:30 PM	Change soiled diaper and put my son to bed. Tidy up the living area and relax.
10:00 PM	Wash and sanitize hands. Prep fresh batch of formula for the next day. Prep and administer nighttime medication via G-tube extension and flush with filtered water.
11:00 PM - 12:20 AM	Sleep/Rest as much as possible