Monday, September 30, 2013

Learning Session Part 2

 I loved being there.  I loved having an opportunity to hear the passion, enthusiasm, and hope in these practitioners voices.  I loved being able to engage with Cardiologists around the country and get down and personal to share what its like being the parent of a very complex child.  I loved seeing the chemistry between Parents and Practitioners working as partners in this.  It's exciting!  I loved catching up with Cecilia's former Cardio too.  I didn't really realize how much I missed her or talking to her until I saw her.  I liked hearing the teams talk all things Interstage.  What works for them to what doesn't.  I especially loved the candid conversations.  I can be open and real when it comes to my baby and our journey, and it was just cool to have strangers do that with me too.  They have this one part called a "Break out Session"  where teams can pick where they want to go, based on the topic.  In one of the rooms, the parents sat on a sort of panel and the Cardio's/ Nurses were welcomed to ask us basically whatever they wanted.  I appreciated the question, "How does this experience effect your marriage and what kind of toll does it take on the siblings?"  or something along those lines.  That question actually meant a lot to some of us parents.  We are usually not asked about that, but it meant a lot that they are curious enough to care about that aspect of our lives.  It evoked an emotional response, and as the questions kept pouring in I changed the name of the session, "the Breakdown Session" lol.   I don't care if I cried in there.  I was thankfully not the only one.  Love my heart Moms!

When you first get to the Learning Session, you find a ton of tables and your seating arrangement.  They like to put the parents with their center.  I knew this beforehand, and I was struggling with where would I sit (not sure where I belonged) so I requested it to be random.  I sat with INOVA Fairfax Hospital for Children (Virginia), and Children's Mercy Hospital and Clinics (Kansas City).   I felt like I was at the cool table!  I just felt really lucky... haha if you leave out the part that the speakers didn't work where I was sitting and I could hardly hear anyone speaking the entire time ♥.  But, I was sitting next to someone presenting a new technology of Interstage home monitoring.  She let me play with it on Friday and I reviewed it, basically just gave my opinion.  What the peeps at Mercy are doing is giving their families a little computer tablet to record their data, rather than a binder.  It also can take your babies Saturation!  This was such a cool tool.  It did all of the math for you.  If your baby did not gain the right amount of weight today, it actually reminds the parent --like, Hey! this is a red flag.  Same thing for the pulse ox.  They also have a video recorder on it.  They ask their families to record breathing for a short time each day to establish a visual baseline.   The best part about this is that all of the information you put in gets sent to the Doctor today.  For me, that just seemed comforting on top of its innovative awesomeness.  I'm a constant worrier, at least I was during Interstage.  I think I would have felt a lot safer knowing her Doctor could look up what Cecilia was sating, etc. anytime she wanted to.  Most importantly, both of these teams made me feel welcomed.  They truly "engaged" me and I wont be surprised if I see them with their own Parent Rep next time. 

So, onto Parent Engagement.  One Center, CMC Dallas, presented first.  I thanked them on behalf of all of us parents.  CMC Dallas have an Interstage focused Family Advisory Council.  They invite  their currently enrolled Interstage families in for meetings for both support and working together as advisors to improve the quality of their center's care.  How awesome is that?!  For real!  I imagine their families feel valued.

After their presentation, Diane and I took the Microphone.   I was so nervous.  It also didn't help to know that there was 160 people there looking at me!  I just kept thinking over and over, I better not puke, I better not faint!  Though I did not read from a script, I had wrote everything I wanted to say down just in case my mind went blank up there.  So that's the only way I can give you an idea of what I said.  I started out by saying I didn't really understand the practice of Medicine, because I'm just a stay at home mom to 5 little girls...maybe I don't know a lot compared to them, but one thing I felt strong about was parent engagement could improve outcomes.  At least I believed it made a difference in our journey.  When Cecilia was finally discharged post Norwood, I was terrified, isolated, overwhelmed, stressed, and I just felt alone.  The reality was that  I wasn't confident that I could pull Interstage off.  I mean, I could barely survive a morning in my household with all of my responsibilities.  I woke up everyday wondering, is my baby going to die today?  I worried constantly so how would I know when to call?  What if I miss something?  Our Interstage NP, Caroline gave me her cell # before discharge and said to call or text anytime if I wasn't sure.  But I was probably never going to call or text her.  I just didn't want to burden her.  A few days home, she texted me something simple, just to let me know she was thinking about us.  She engaged me and that broke this barrier I had of fear.  Fear to bother her.  Eventually I was so comfortable to text her that I would even ask questions that were probably silly.  But she never made me feel bad about it.  That was a key point and I hope that people "got it".  It didn't matter how many stupid questions I had, as long as I felt better, she was happy to answer them and she was always there.  Then when the time came, that calling in a concern mattered most (in my speech I called it serious business) I just didn't hesitate to call.   I wished Caroline was there to hear what I said.  Then Diane went through identifying possible barriers to engagement between parents and practitioners.  Being sleep deprived, fear, anxiety, anger, lack of knowledge are just examples but she was able to apply them in her own personal story.  Then it got really fun because we opened up the topic to the Audience.  All of the parents and practitioners were able to weigh in and offer their own insights, suggestions, conflicts and experiences. 

One presentation I know a lot of you will be happy about was called "Community Cardiologists as Partners".  I hear stories from frustrated parents about communication conflicts between their surgical center and local center all the time.  I'm glad it was a topic.  At Omaha, they keep the patients local doctors in the loop during the inpatient stay and they just include them as part of the team. 

All of the workgroups were able to present and keep the rest of the Collaborative up to date.  There's a Feeding group, Readmissions work group, and Mortality.  I remember taking a pic of a graph during one of the work group presentations, but it didn't come out great.  They had surveyed the teams on whether or not they allow patients to go home with an NG feeding tube, or whether their policies utilize a G-tube more.  Where Cecilia was, you could not do the NG discharge.  I know for some parents what type of feeding tube they prefer is important to them, so I would like to understand more behind this and the decision on policies.  It was close to half said no to NG yet close to half said yes.  I have no regrets with the G-tube though  I did think it was interesting.  For the mortality group they brought up the "cause of death".  It didn't really answer many questions and the truth is after all of this passionate work and commitment to identifying answers they really cant "move the needle",   and the mortality of patients discharged in between stage 1 and stage 2 has pretty much stayed the same.  Keep in mind, they only enroll patients into the Collaborative database that are discharged home.   They proposed possibly we need to go back.  Back to birth.   As a parent, it makes me wonder what is the real mortality here?  It's my first thought.  They don't have all of the patients that have died post Norwood, some I know of even pre-Norwood.  And some patients, while making it to stage 2, still never discharged until well after- which leaves them out of the data too.  They suggested important key factors to possibly learn from and look into is pre-operative management, surgical technique, and post operative management.  Doing this would then also include the patients that passed away without ever making it home.   Doing this might answer a lot of questions about what is the best way to care for this group of patients. 

The other hot topic, and honestly the one I am most desperate for, is Data Transparency.  There's a great story that I encourage you to read if you can (link here), called "Annals of Medicine:  The Bell Curve".  What happens when patients find out how good their doctors really are?   The collaborative network for Cystic Fibrosis (much like this network for HLHS) decided they needed transparency to drive improvement.  At Cincinnati Children's, the CF team there found out they were just average.  The first honorable thing they did was have an honest look at their program, accept that they weren't the best, and have a desire to improve and work for it.  The second honorable thing they did next, was they told their patients and families the truth.  The parents decided to stay even knowing their child might live a lot longer if they get care somewhere else...and they worked together as partners, or as a team.  The parents trusted their doctors, respected the honesty, and wanted to have a role in making their team at Cincinnati better.  It took some fighting on their part, but eventually Cincinnati learned who were the actual best centers.  They visited them and learned from them.   We had a speaker actually retelling the story herself at the learning session.  I wish I could retell it to you just as she had, because it was very moving and inspiring. 

Wouldn't it be amazing if 2 or more teams stood up and volunteered to explore the idea that transparency drives improvement?  What if one center below average, average, and "best" all worked together more closely, visiting each other's site and offering advice and insight?  What if transparency saves lives?   What if transparency is enough incentive to change?  In a lot of ways, it isn't fair that care is better at other places.  It isn't fair to the children and families who cant change their center because of Medicaid. 

The audience were to discuss their thoughts, concerns, and ideas behind Transparency.  How do they feel about telling one another within this network their outcomes, to telling their patients where they are, to then the idea of telling the public?    I felt disheartened by a comment a couple times but for the most part I was really enlightened to see most of these centers are at least open to the idea and not initially defensive and against it.   I knew that Tabitha, Waylon's mom, was in the room.  After someone brought up her CNN article negatively, she bravely stood up and said you're talking about me.  # Badass!  Unfortunately, I couldn't really hear her talking because again the speakers near me were not working :(  But... because I have spoken to her countless times about this topic, I am sure what she said came from her heart.  When parents like us advocating for transparency all we hope for is understanding that this is our children's lives.  A hope for teams to  stop pretending the quality in care is equal everywhere, and instead work together to make it true. 

Learning Session Part. 1

I know all of my heart Mom friends are just waiting for one of us parents to give you a recap.  I am sitting here wondering how can I actually put into words how much I loved being there...  How can I recap it?  Will what I say even justify how impactful it was to me?  It's kind of hard to process everything that happened.  I just want to say it was the best experience. 

So, I am going to try to separate both aspects into 2 parts, and hopefully do both of those for you today.  First, on a social level, finally meeting parents who I have had these strong friendships and deep connections with, to the opportunity of making new ones.  The second part blog will go into detail of the Learning Session topics itself.

PLEASE contact your teams and get involved.  No team invited me along with them.  You may even reach out to your child's Cardiologist and still not be invited to come with them (Hey, that happened to me lol).  If your heart is set on having this experience, don't give up.  The Midwest Heart Connection  held a scholarship and that's how I was able to get there.  You also can contact Kay Fricke, who is the Parent Engagement Coordinator, aka the most helpful person who solely focuses on us parents.  I hesitated to really commit to this because I am not a professional anything (high school drop out, stay at home mom).  I feel super uneducated in comparison to other parents who come.  But what I realized is that's the perfect recipe.  To be honest they want more diversity among the parents. So please don't feel like you wont fit in, or have anything to offer.  You are a parent to an HLHS child, so you fit in.  Period.  ♥

First I will talk about meeting the other parents in the Family Advisory Committee.  We have been having frequent conference calls with each other and countless emails.  These parents are Nikki, Stacey, Julie, Diane, Travis, Trent and myself.  We come from all different parts of the country and different backgrounds and journeys.  For me, meeting them all in person was a blast!!! We just work so well together and it actually does feel like we've been friends for much longer than what we have been. 

We come to this Learning Session, Centers all in the Collaborative-  Nurses, Doctors, and Parents, ect... uniting from all different parts of the country for one thing.   To improve the survival of Interstage in HLHS.  When you put it that way we're there for the heart angels.  For Anya, for Demyni. 

For Lily Grace and for Ethan.  For Brooklyn and Alyssa.  For every baby that passed away before the Glenn. 
For Corinne.
"I just want them to know that I gave my all, did my best, brought someone some happiness, left this world a little better just because-  I was here"  - Beyoncé
Friday night, the attending parents went out for dinner and drinks.  I finally got to meet Sarah, who I "met" in an online support group actually before Cecilia was even born.  Sarah is the mother to Corinne Rose.  I make these 2 scrapbooks for Cecilia.  Heart Friends  I started while she was Interstage to help me cope when my husband had to return to work--- and I wasn't able to be at Cecilia's bedside very often because we had no one else to care for our other 4 children.  It hurt me so bad to know she was in there alone.  So I made these pages, stories of her heart friends from around the world, so she had something to look at in her life to remember she isn't alone.  A lot of the parents to the children in this book were there ♥....but I couldn't forget the Angels.  I wanted to do something for these parents, to know I think of them often and that their baby will not be forgotten!  So I made a book for them too. You can see all of the hearts for Angels here.  Meeting Sarah was one of the best moments for me.  She wanted me to know what I did---just how much it meant to her ♥ 
Sarah and I at dinner.
The dinner was so much fun...laughing about things that no one else will get unless you have been through this process....sharing our stories and it doesn't matter how many families I meet, each of them amaze me.  I got to make new friends too.  I got to meet adult HLHSer, Meghan!   She is like my hero.  Never letting HLHS stop her from living her life to the fullest. 
I got to hang out with a lot of the Sisters By Heart.  These are special Moms who were there for me in support groups all the time, in every chapter of Cecilia's journey!  hanging out with them =  epic   ♥ 
Last but not least, my roommate Jennie, mom to Tyler.   It wasn't hard for us to get along, we're both outgoing and fun.  While we didn't know each other that much before signing up to be roommates, I'm so glad that we did!  We were both exhausted on Saturday, yet decided to take a walk in the city before dinner.  That was a lot of fun and cool just to be out and about in downtown Cincinnati exploring... but I just think the conversation we are able to have made everything more awesome.