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4/19/92 (Day 155) — Children’s Memorial Day 7

April 19, 2011

This was my pass to visit Molly at Children's. The paperwork for all this was overwhelming. We have boxes of notes, charts, insurance forms, bills, treatment plans and followup reports. By this point, Kenn and I had definitely started to divide up the responsibilities. He took care of all the insurance and billing; I took care of all the forms (and forms and forms), appointments and followup care. He worked with the home nursing company to make the schedules, I did all the schlepping to doctors and therapists. We both could have done this work full time, if little things like building a business, maintaining a household, cooking, cleaning, laundry and helping care for two older children didnt also need to be done. Today, there are wonderful tools, like Caring Bridge, to help organize volunteer help during long crises. Some people were very generous with their time and help, but I don't think most people had any idea what we were going through once the babies came home. We put on happy faces (because we were happy), so most people assumed everything was under control. It was especially difficult while Molly was at Children's and Ike was home, with me running back and forth between Lincoln Park in Chicago and our northwest Evanston home. I've learned a lot since that time about asking for and offering help for families in need.

Home Care Treatment Plans

Theses were the plans written by the supervising physician and submitted to the home nursing care company and the insurance company. Dr. Gardner signed Molly’s; Dr. Lum signed Ike’s. Theses were rewritten about every two months to get authorization for continued home nursing care.

(applies to both babies, unless otherwise noted)

Molly: 3/11/92 – 5/1/92; Isaac: 3/25/92 – 5/1/92

Diagnosis (see Glossary as needed):

Molly — Respiratory Distress Syndrome, Atrial Septal Defect, Patent Ductus Arteriosus; Isaac – Bronchopulmonary Dysplasia

Functional Limitations: bowel/bladder incontinence (infant)

Activities Permitted: Up as tolerated, exercises prescribed

Mental Status: Alert

Prognosis: Good

Rehabilitation Potential: Good

Allergies: NKA (no known allergies)

Nutritional Requirements:  Molly — Simulac 20 calorie, breast milk; Isaac —  breast milk

Medical Supplies and DME Ordered: O2 (oxygen) & Supplies, C/A Monitor, pulse oximeter

Homebound Status: Prevention of infection, needs 24-hour adult supervision

Living Arrangements: Lives with willing person

Unusual Home or Social Environment: Not applicable

Assistance From Relatives and/or Friends: Yes

Name of Available, Able and Willing Caregiver: Kenn & Susan (parents)

Number of Persons in Household: 4

Teaching of Family and/or Significant Others: Yes

Therapies: N/A (not yet — those would come later)

Frequency of Nursing: Up to 16 hours/day RN or LPN

Nursing Skills Required: Skilled observation, administer inhalation therapy O2 1/4 LPM

Assess Vital Signs & Report Changes to MD

Evaluate Status of: Cardiorespiratory, GI, Neuro, Musculoskeletal

Evaluate: Response to medication treatment and for possible side effects, usage and precautions.

RN to Instruct Regarding: Safety measures, infection control, oxygen uses and precautions.

Vital Signs: Every shift.

Short-term Goals: RN to promote stabilization of vital signs, infection prevention, proper feeding techniques, provision of safe environment, correct use of medical equipment.

Increased: Family to have increased level of understanding and compliance with medication regime, level of understanding and compliance with diet regime, understanding signs and symptoms of infection, understanding of signs and symptoms requiring medical attention, understanding of appropriate emergency procedures.

Long-term Goals: Independent as possible with home program, family to provide all needed care. Patient to: have intact skin integrity, be free of infection, show development to progress as close as possible to chronological age.

Safety Measures: Side rails up at all times, promote infection-free environment, needs 24-hour supervision, safe transfer techniques, emergency plan/numbers available, supervision of medication administration, oxygen precautions.

Discharge/Continuing Care Plan: Patient to return to care of family; patient to be discharged when long-term goals are met; patient to require M.D. followup.

Home Respiratory Orders: O2 1/4 LPM (liters per minute) per nasal cannula

Medication Record: Isaac — Theostat 2.3 mg every 6 hours PO, (handwritten note to change to 3.1 mg every 8 hours), Iron .12cc BID PO; Molly — Vidaylin 1cc every day PO; Fer-in-sol .08cc tid PO, Theophylline 3.2 mg tid PO

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