A Day in the Life of Bo's Care: not for the faint of heart

Where are his teeth? Does he need a diaper change? When, and how long was his last nap? These standard baby questions are sprinkled through the day along with more specialized care questions like: did you call the pharmacist to ask for more fluids? did Nurse Kathy call with today's lab results? what did the pediatrician's office say about giving him an oral vaccine? does he need a dressing change today?

Above, a new dressing on the catheter that goes through his subclavian vein into the jugular that feeds right into the heart. Bo's Omegaven and TPN (all his nutritional needs) get pumped into his body through this "line" into his heart, and to all the cells in his body.

Below is a description of all the stuff we do for Bo on any given day. In the medical/insurance world, this is called a "24-hour plan of care," and must be incredibly detailed. Also, this list is to try and convince the audience (insurance) that we need more nursing care in the home.

And while this list seems daunting, the reality is that the biggest problem we are having is keeping him from getting bored during the day. The weather is too cold and snowy for our daily walkies anymore. So he ends up getting toted around a lot. He probably has a few more diapers than his peers, and they're probably bigger diapers, and you have to sling his TPN backpack over one shoulder for the morning, but taking care of him during the day is probably not that different from any other baby in most other ways. And he sleeps through the night, so after, say 7pm, it's all grown-up time.

• 6:15-7:15pm aseptic connections for tubing set-up (this is also done if his line ends up on a pool of excrement in the morning, requiring stopping the pumps and re-spiking the bags with new aseptically connected lines as an infection prevention measure)
• 7-7:05am aseptically flush lipid (Omegaven) line with saline
• 3-3:05pm aseptically flush and heparin lock Broviac (CVL)
• hourly (24hrs) monitor input and output for dehydration (typically 4-7 watery and explosive defecations, 6-7 urine output)
• every 4-5hrs (24hrs) monitor temperature 3-4x for elevated temperature as an indication of infection
• 24hrs monitoring and adjusting lines for security and to prevent CVL breakage/removal
• 24hrs monitoring skin pallor for jaundice as indication of return of cholestasis
• 24hrs administer IV antibiotics and fluids as needed
• weekly measure weight, length and head circumference to ensure proper nutrition compounded in TPN
• several hours a day, daily maintain sterile technique, and a clean environment conducive to aseptic line construction
• 6:30-7am clean bedding from fecal matter to prevent line infection
• weekly/as needed perform cap changes with sterile technique
• weekly/as needed perform CVL site dressing changes using sterile technique; this can be done more frequently if the dressing detaches itself from the child before the week is up, if it becomes soiled with vomit or other moisture, or if the catheter loop has been pulled out.
• 5-5:45pm bathe infant with CVL
• every 4-5hrs (24hrs) monitor skin integrity and CVL entry site for discharge, discoloration and patency monitor skin integrity of diaper area for dermatitis (he is at high risk for this due to excessive, watery, and explosive diarrhea)
• 24hrs constant vigilence 24-hour supervision for 20-hr TPN cycle and 12-hr lipid cycle; monitor line integrity
• 7:15-8:30am, 10:30am-1pm, 3-5pm developmental play to achieve age-appropriate milestones: OT/PT/speech therapy
• 7:05-7:30am, 12:30-1pm, 6-6:30pm express milk into bottles, label and freeze milk, wash and sterilize pump parts
• 7:30-7:45am, 1-1:15pm, 6:30-6:45pm- nurse for comfort and to maintain oral-motor development
• 5:45-6:15pm monitor and manage medical supplies: stocking, receiving and re-ordering1-5hrs, daily, depending on whether Bo is in-patient, and other variables medical communication management: pediatrician, GI specialist, visiting nurse, EarlyOn, Great Start, home infusion company pharmacist, primary insurance case manager, secondary insurance case manager, hospital staff (as needed)
• 24hrs constant vigilence monitor pumps and adjust as needed with alarm

The only meds Bo is currently on are his TPN and Omegaven. When he has a line infection, the antibiotic and dosage is determined by the microbiology results. For instance, his last (and only, knock wood) line infection required a Vancomycin dose of 50cc @ 1cc/hr. This was administered Q6 for 10 days. The schedule was grueling and was like so:

• 5am- take antibiotic out of refrigerator to achieve room temperature by time of administration
• 5:30-6am- aseptically assemble tubing and additional pump for antibiotic administration
• 6-7am- aseptically flush 3rd lumen of triple splitter, clamp the Omegaven line and stop its pump (as its compatability with anything has not been studied), administer antibiotic
• 7-7:10am- stop the antibiotic pump, flush that third lumen again, re-start Omegaven pump
• rinse, lather, repeat 11am-1:10pm, 5:30-7:10pm, and 11pm-1:10am... for 10 days.

It should be noted that monitoring diaper area during this course, and for the week following must be incredibly diligent, as the natural microflora of the skin is also disrupted and often results in yeast blooms in that area when the normal bacteria are destroyed. Break-down of skin, red bumps, rash, raised plaques, etc. Often we will use prescription diaper cream with miconozole prophylactically during and for 5 days after antibiotic treatment to prevent diaper rash from occuring. This must be administered at each diaper change (7-10x/daily). Then, when he had pink eye, the procedure require eye drops administered 4x/day for 7 days:7-7:10am- dose both eyes with 2 drops each, and again at 11am, 3pm, and 7pm.

Additionally, because of his excessive, watery and explosive diahrrea, in the mornings, after we clean his bed, change his clothes and give him a new diaper, we have to monitor his penis for engorgement with puss and discharge, which may be a precursor to a urinary tract infection. This requires pulling back the foreskin, inspecting for redness or discharge, squeezing the penis and inspecting for discharge, and monitoring for swelling or redness in the penis. This last step is performed at every diaper change.