Home Nursing

The home nurse served as the clinical coordinator of the care plan. During each visit, the nurse monitored Arman’s vital signs including blood pressure, heart rate, respiratory rate, temperature, and oxygen saturation using a pulse oximeter and other devices as clinically indicated. These values were compared against his established baseline to detect trends.

The nurse observed his respiratory status closely. This included watching his breathing pattern, noting the quantity and character of secretions, monitoring his cough, and assessing his activity tolerance. Given that the recent hospitalization was for a respiratory infection, this monitoring was the highest priority in the early weeks.

Medication support was provided to ensure adherence to the discharge prescriptions. The nurse confirmed that medications were being administered at the correct times and doses, and watched for any possible side effects.

Nutritional and hydration monitoring involved tracking Arman’s food and fluid intake, meal duration, and any coughing or discomfort during meals. The nurse also checked his weight when possible and observed for signs of inadequate nutrition or dehydration.

Skin assessment was performed during each visit. The nurse inspected the sacrum, hips, heels, ankles, elbows, and shoulder blades for any early signs of pressure injury. This systematic pressure ulcer prevention approach is essential for individuals with limited mobility who spend prolonged periods in one position.

Neurological observation was ongoing. The nurse compared Arman’s alertness, responsiveness, muscle tone, movement patterns, and behavior against his known baseline. The family maintained a simple observation diary to record any significant changes between nursing visits. Any new neurological symptoms were to be communicated to the treating physician promptly.

Patient Attendant

The patient attendant provided the hands-on daily living assistance that Arman needed throughout each day. This included helping with bathing, dressing, toileting, and personal hygiene. The attendant was trained in the specific techniques needed for someone with severe motor impairment, including how to support his head and trunk during these activities.

Feeding assistance was a key responsibility. The attendant helped position Arman correctly for meals, provided food at an appropriate pace, and watched for any signs of swallowing difficulty such as coughing, choking, or a wet-sounding voice. These observations were reported to the nurse for further assessment.

Repositioning was carried out according to the individualized schedule developed by the physiotherapist and nurse. The attendant learned which positions were most comfortable for Arman, how to use positioning pillows and the adjustable bed effectively, and how to check pressure areas during each position change.

Transfer assistance was provided for all mobility transitions: bed to wheelchair, wheelchair to chair, toilet transfers, and shower transfers using a shower chair and bathroom grab bars. The attendant was trained to lock the wheelchair brakes before every transfer, use appropriate body mechanics, avoid pulling on Arman’s arms, and request additional help when needed for safety.

The attendant also supported daily living engagement. Although Arman required extensive assistance, he was encouraged to participate in activities whenever possible. This included reaching toward familiar objects, choosing between clothing options, holding a cup with assistance, and participating in grooming routines. This approach helped preserve his engagement and dignity.

Physiotherapy

The physiotherapist focused on maintaining Arman’s existing function rather than attempting unrealistic mobility goals. This distinction is important in conditions like Walker-Warburg syndrome, where the underlying neurological impairment does not improve. The aim was preservation, not recovery.

The rehabilitation program included gentle range-of-motion exercises for the shoulders, elbows, wrists, hips, knees, and ankles. These movements were incorporated into daily care routines rather than performed as isolated exercise sessions. The goal was to preserve comfortable joint positioning and available movement. Forceful stretching was specifically avoided because it could cause pain, muscle tearing, or increased stiffness.

Supported sitting was practiced to build and maintain Arman’s tolerance for upright positioning. This was important not only for his participation in daily activities but also for respiratory function, feeding safety, and social interaction.

Wheelchair positioning was reviewed in detail. The physiotherapist checked head alignment, trunk position, pelvic alignment, hip position, knee position, foot placement, and upper-limb support. A pressure-relieving wheelchair cushion was used to reduce the risk of pressure injury during prolonged sitting.

Transfer practice was included to help refine the techniques used by the attendant and family. The physiotherapist observed transfers and provided feedback on safety, body mechanics, and Arman’s comfort during each transition. The program was stopped or modified immediately if Arman showed any signs of significant distress, pain, fatigue, or respiratory difficulty during sessions.