1. Lisa Ann Morrise, MArts Family Member and Patient Advocate Co-Lead of the Patient and Family Affinity Group of the CMS National Partnership for Patients

2.  Michael was born at 31 weeks after a first trimester abruption led to placental failure. His low weight was 2 pounds 7 ounces. He was on the vent for a few days and developed BPD, NEC, bradycardia and apnea. He came home after 50 days in the NICU on oxygen and monitors.

4.  Timothy was born at 38 weeks, weighed in at 5 pounds 13 ounces, and cried non-stop for 9 months. Solid.

5.  Kirsten was born at 38 weeks, weighed 5 pounds, 3 ounces and was unable to breathe or swallow due to Pierre Robin Sequence.  Eventually she had a tracheotomy & G-tube.  Kirsten was de- cannulated at a year, re-trached at age 8. She has had 39 surgeries – so far.

6.  Our Pediatrician, Wayne Cannon, folded his 6 foot 7 inch self into a small chair and spent over an hour explaining what was ahead of us with Kirsten. He then called me almost EVERY morning for a year.

7.  Kirsten’s Otolaryngologist, David Hill, has seen her as often as once a month for 20 years. He has participated in most of her 39 surgeries. He has even come in on Super Bowl Sunday to do a bronchoscopy when Kirsten had a major saddle injury that needed a two-hour surgical repair.

8.  Failure to resuscitate at birth – found out sixteen years later that because of my daughter, the hospital now trains on PRS  Communication Errors “Do not suction after tobra...” “I’ve cared for 33 PRS babies.” – 1 st year Resident in July.  Sloppy Care Do you know how to take out a femoral line? Gee, I don’t either. (Nurse & Resident discussion outside of room – in earshot)  How to turn a nice person into a “Difficult” parent!  As a “Type A” person I had to evolve I finally figured out there was more than one way to suction a trach At some point I decided I was MOM not the Head Nurse This took about ten... years...

9.  I found the Institute for Patient and Family Centered Care online: www.ipfcc.org Excellent resources that have evolved in the last 18 years to support PFCC in hospitals and other healthcare settings  I was asked to join the Primary Children’s Medical Center Family Advisory Council.

10.  For the many years the PFAC was an advice, and sort of consent group.  Shed light on many hospital practices  From my research into PFCC, I knew it could function more effectively.

11.  With new hospital leadership, we re- vamped the PFAC. I wrote new by-laws, created term limits and developed a family leadership structure.  We had a “solution” focus  Shortly thereafter I was hired as the PFAC Coordinator. Part-time.

12.  We made incredible progress, creating a collaborative atmosphere New Parent Hours Informed process Facility Design Educational Materials that reflected parental input  Started a Youth Advisory Council

13.  Patient and family advisors work in a variety of healthcare settings sharing their personal stories to represent all patients and families in providing and educated perspective of care by bringing authenticity, empowerment, respect and inspiration to the design and delivery of healthcare systems. Patient & Family Advisor roles include partner, educator, speaker, listener, advocate, collaborator and leader, ensuring the focus of healthcare is centered on the patient and the family.* * Collaboratively written by the patient and family advisors in attendance at the IHI Forum, 2012.

14.  Welcome Patients and/or Family Members onto your Committees Quality & Safety Committees Boards of Trustees  Real patients – not just “community leaders.” Other Committees Two or more patient or family members is best.

15.  Too sick to be cared for at home!  Kirsten was discharged with home health after 12 days in the NICU.  She was back in the Children’s Specialty hospital in less than a week.

16.  Sent home without getting better!  Had pnuemonia when she was one. Had a tracheotomy.  Normal O2 was room air.  Sent home first time on 2 liters, came back on 4.  Sent home second time on 6 liters, came back on ten!!!  Stayed in-patient until she got back down to room air.

17.  Hospitalized 16x her first year.  Hospitalized many times her second year.  Was accepted onto the Medicaid Waiver – finally had night nursing.  Significantly fewer hospitalizations

18.  Going home = hurry up and leave  In our experience, you are in until you’re out.  Often relied on home nurse for education and care post- discharge – otherwise would have been more readmissions

19.  Clinicians who rely on protocols –like patients go home five days after jaw surgery – instead of looking at the patient.  Nauseated but sent home. Vomited with jaw wired shut. Back in-patient!

20.  Challenges are predictable  My ex-husband broke his back. I told him, “They will want to send you home with no preparation.”  That happened – but he was prepared and said, “No!”

21.  We appreciate all that has been done to contribute to our family being able to be home together.  We hope that you will help other patients and families be at home, safe and with the support they need!