Chronic Vent Care by https://padlet.com/carolyndress/38vishe1ip90dnpx Session 2 en-us 2022-02-17 16:59:03 UTC 2022-05-16 20:14:23 UTC hello@padlet.com https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063248849 They would be in the hospital for months]]> 2022-02-23 19:22:58 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063248849 ...lots of hardworking... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249084 2022-02-23 19:23:07 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249084 That if they fire a in home nurse, chances are they are not going to get a replacement. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249456 2022-02-23 19:23:20 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249456 Having all necessary parties available at once. carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249986 2022-02-23 19:23:40 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063249986 More details about what to expect nathanpajor https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250134 2022-02-23 19:23:46 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250134 Time, work, other children in home and no support. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250333 2022-02-23 19:23:53 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250333 Working around parents busy schedules! They can't be at the hospital 24/7. carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250737 2022-02-23 19:24:06 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250737 BUSY carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250901 2022-02-23 19:24:12 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063250901 Wonderful Medical place, but not home. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251310 2022-02-23 19:24:26 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251310 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251381 More detail about transition to TCC]]> 2022-02-23 19:24:29 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251381 More funding and more buy-in from hospital higher ups carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251814 2022-02-23 19:24:44 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251814 time in the hospital, lack of resources nathanpajor https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251868 2022-02-23 19:24:47 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063251868 build a respite care facility, and hire a large group of competent well paid home nurses https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252158 2022-02-23 19:24:55 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252158 ? https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252279 2022-02-23 19:24:58 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252279 social work, psychology - wish we could have more presence carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252347 2022-02-23 19:25:01 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252347 how they are coping emotionally carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252623 2022-02-23 19:25:11 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252623 What life would look like in terms of complexity of medical care, social life changes, impact on spousal relationships and siblings... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252660 2022-02-23 19:25:13 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063252660 how the tcc is different than the NICU/PICU carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063253235 2022-02-23 19:25:33 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063253235 So many individuals involved, it can confusing. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063253279 2022-02-23 19:25:35 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063253279 "easy steps to home" - a lot of going home is out of their control carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254261 2022-02-23 19:26:08 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254261 train our own home nurses https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254520 2022-02-23 19:26:18 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254520 a ton carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254659 2022-02-23 19:26:23 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254659 to create a resource for more nursing in the home? https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254793 2022-02-23 19:26:27 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063254793 Many people, https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255131 Handoff for transition should be more in care conference setting. ]]> 2022-02-23 19:26:40 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255131 having simulation and competency based evaluation https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255397 2022-02-23 19:26:46 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255397 Care Conferences https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255478 2022-02-23 19:26:49 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255478 make-a-wish, child life carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255727 2022-02-23 19:26:58 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255727 family dynamics and well being carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255965 2022-02-23 19:27:06 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063255965 this is a marathon https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256054 2022-02-23 19:27:09 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256054 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256097 More resources for families and staff members . ]]> 2022-02-23 19:27:11 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256097 parent availability, fear factor i.e. "its too hard", "I can't do it"... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256335 2022-02-23 19:27:21 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256335 support families facing the decision to start long term ventilation and help them have a sense of what life with a child that requires a trach/vent looks like for the child and for the rest of the family. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256426 2022-02-23 19:27:24 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256426 more staff to provide social support. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256460 2022-02-23 19:27:25 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256460 develop goals for the team to accomplish https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256673 2022-02-23 19:27:34 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256673 No inhome nursing available https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256894 2022-02-23 19:27:43 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063256894 very intense https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257096 2022-02-23 19:27:52 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257096 standardize certain components of care across providers https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257128 2022-02-23 19:27:54 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257128 lack of interest from the hospital in expensive but needed resources carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257228 2022-02-23 19:27:58 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257228 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257537 Nurse practitioners ]]> 2022-02-23 19:28:11 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257537 stress on staff https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257634 2022-02-23 19:28:14 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257634 take care of yourself carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257637 2022-02-23 19:28:14 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257637 Status of mental health issues https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257847 2022-02-23 19:28:23 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257847 have our own care facility carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257988 2022-02-23 19:28:28 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063257988 long-term outcomes https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258368 2022-02-23 19:28:42 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258368 support families currently admitted in the tcc through social groups carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258509 2022-02-23 19:28:47 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258509 Resource availability https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258546 2022-02-23 19:28:48 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258546 options for respite care odarcc1 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258603 2022-02-23 19:28:50 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258603 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258859 Lacking, due to short staffing ]]> 2022-02-23 19:29:00 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258859 burnout of staff and caregivers carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258907 2022-02-23 19:29:02 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258907 ...not enough developmental experts/ people .... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258959 2022-02-23 19:29:04 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258959 hire a team of babysitters and other care providers to help TCC parents have time to take care of themselves, complete education/training, and take care of their other kids at home https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258988 2022-02-23 19:29:05 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063258988 hospital care for respite https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259005 2022-02-23 19:29:06 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259005 messaging from day 1 carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259366 2022-02-23 19:29:19 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259366 babysitters, aides, etc. to help with everything except nursing care https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259758 2022-02-23 19:29:33 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259758 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259937 More mental health resources for staff and families. ]]> 2022-02-23 19:29:35 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063259937 ... alternate discharge options https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260364 2022-02-23 19:29:50 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260364 impact and stress levels of entire family odarcc1 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260641 2022-02-23 19:30:01 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260641 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260700 Have a more homelike facility. With efficient space. ]]> 2022-02-23 19:30:03 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063260700 resource availability https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261069 2022-02-23 19:30:15 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261069 other children in the family and their needs odarcc1 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261517 2022-02-23 19:30:32 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261517 using all available time when parents are at bedside, meaning more people educate than just "educators" carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261533 2022-02-23 19:30:32 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261533 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261567 Resources ]]> 2022-02-23 19:30:34 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261567 political lobbying to somehow create incentives for nurses and other medical providers to go into home nursing programs and careers. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261583 2022-02-23 19:30:34 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063261583 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262050 More educators ]]> 2022-02-23 19:30:52 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262050 more available nursing, support systems-care management, social work, other supportive resources. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262167 2022-02-23 19:30:56 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262167 develop a parent support group carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262329 2022-02-23 19:31:02 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262329 adding more PT time and behavior medicine support https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262806 2022-02-23 19:31:21 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262806 their availability to thrive with the lack of services available. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262870 2022-02-23 19:31:23 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262870 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262951 Absolutely, as a parent this would be so helpful especially for new parents.]]> 2022-02-23 19:31:26 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063262951 have someone interact and play with them all day/get rid of TVs in the rooms https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263261 2022-02-23 19:31:38 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263261 support for staff https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263414 2022-02-23 19:31:45 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263414 .... take deep breath, and breathe... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263433 2022-02-23 19:31:45 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263433 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263594 Be patient, and understanding of the transition ]]> 2022-02-23 19:31:50 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263594 have concierge services for parents in the TCC like they do for staff carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263955 2022-02-23 19:32:03 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063263955 Having the availability to create more the resources needed. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264296 2022-02-23 19:32:16 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264296 considering an expanded team of educators https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264454 2022-02-23 19:32:22 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264454 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264760 It will be a short hospital course]]> 2022-02-23 19:32:33 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264760 Everything https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264782 2022-02-23 19:32:34 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264782 lack of resources, lack of beds, etc carolyndress https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264849 2022-02-23 19:32:36 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264849 lack of nursing https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264999 2022-02-23 19:32:41 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063264999 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265066 Availability of parents and staff]]> 2022-02-23 19:32:44 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265066 integrating formal Cerebral Palsy assessments into the inpatient settings https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265461 2022-02-23 19:32:54 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265461 Team continuity https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265617 2022-02-23 19:32:59 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265617 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265801 Staffing issues and parent schedules ]]> 2022-02-23 19:33:06 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063265801 lack of discharge options (locations, nursing.... etc) https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266064 2022-02-23 19:33:17 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266064 Have a facility specializing in these patients that provides a one stop shop atmosphere. https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266116 2022-02-23 19:33:19 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266116 more publicity! https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266447 2022-02-23 19:33:31 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266447 having educators that go to the families instead of making the families come to the hospital for education https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266531 2022-02-23 19:33:34 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266531 Time and money, mostly money https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266652 2022-02-23 19:33:38 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063266652 small groups? https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063267258 2022-02-23 19:33:58 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063267258 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268216 Stressed staff ]]> 2022-02-23 19:34:31 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268216 about supports outside of the hospital https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268520 2022-02-23 19:34:40 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268520 ... other families navigate complex decisions... https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268869 2022-02-23 19:34:50 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063268869 lots of really dedicated https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063269609 2022-02-23 19:35:06 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063269609 whether families have any regrets regarding medical decisions they have made for their children https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063269727 2022-02-23 19:35:07 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063269727 https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063270463 quality of life ]]> 2022-02-23 19:35:22 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063270463 the delay in getting their kids home is their fault https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063271374 2022-02-23 19:35:50 UTC https://padlet.com/carolyndress/38vishe1ip90dnpx/wish/2063271374