Midnight ramblings of the DNP student:

Midnight ramblings of the DNP student:
This is such an interesting conversation for me. My identified specialty has been hospice and palliative care for the last 7 years, and 5 years of that has been pediatric hospice and palliative care. This discussion around quality of life, suffering, and futility is one that I am definitely passionate about. I started my nursing career as a neonatal intensive care nurse. To say that futility was very present in my practice was an understatement. I can remember at the early onset of my career being very aware that it cost around 4,000 dollars a day just for the bed space that the premature infant that I was caring for occupied. I never thought twice about that then. Now I think long and hard, and it has more to do with the loss of quality of life versus the cost of that bed space.
As someone who has had many discussions with patients and families around quality of life and goals of care I would absolutely advocate for the fact that quality of life is an individual perception. I have practiced throughout my hospice career asking the question, "what is important to you?" or "what are you hoping for?" The surprising part is that the answer is not usually what we as providers expect. It is not usually the patient saying, "a cure," or "not to die," but that they want to be free from suffering or they want their loved one to be okay. It is that they want to make it to a milestone like a birthday or graduation. The issue that we have as a healthcare industry is that we quit including our patients in the conversation. We quit being honest and respecting autonomy in the name of protecting our patients and families from the hard conversations. The reality is that we are protecting ourselves because these conversations are hard. I tell my students way more than they want to hear several things. The first thing is that we don't own our patient's hope. It is our role to give them factual information to aid them in making informed decisions about their own healthcare. They are going to continue to hope regardless of the factual information we give them, because hope is individual and personal. The second aspect is that these conversations improve outcomes, not hinder them. If we don't give our patients the information they need to make informed decisions they will continue to follow a path that may induce suffering and hinder quality of life, the quality of life that they have left. Doing all of the things does not automatically equal doing all of the right things for that patient. Futility leads to suffering and burden which is exactly what we aim to save our patients from. The 60 minutes documentary illustrated this truth beautifully.

https://youtu.be/F6xPBmkrn0g

(And by the way this 60minutes was in 2010...we haven't gained much traction in 9 years which is heartbreaking to me)

"We need to refocus our efforts toward end-of-life care so that we can better identify the needs of patients with advanced illness, and then offer intensive treatment when patients want it, help enable a more peaceful death when they don’t, and learn how to manage that transition" (Jha, 2018, p. 631).

THIS IS MY PASSION...
In a semester in which I was questioning what I was doing this discussion post came at just the right time. Talk about the hard stuff...it is worth more than you'll ever know.
#midnightdnpposts #passion #hpm #pedspal #mycalling


Reference
Jha, A. K. (2018). End-of-Life Care, Not End-of-Life Spending. Jama, 320(7), 631. doi:10.1001/jama.2018.11177

It's been a long time fam...

Tonight I came home from a typical day at work.  Dennie and I decided to go and do happy hour together around Park Circle...we love where we live.  We had some drinks at a Mexican restaurant and then we went and talked to some friends of ours that were out right by where we were for a couple of hours.  It was great.  We talked about everything under the sun and then about nothing at all.  Then I came home and immediately got a message from a former patient's mom on social media.  It was a gut punch.  Not because I didn't want to hear from her...but because it was an instant reminder of my past life.  That I miss...that were some of the best days of my life and in the same breath some of the worst.  I lost one of my most precious patients ever in just a couple of months from now.  I remember because I was on vacation this very week while I was getting messages constantly that my colleagues didn't know if he would make it before I got back.  I remember distinctly praying that he would wait for me.  Selfishly wait for me to get back to be able to be present.  Be present for the hours...minutes...moments before he passed from this existence to the next.  Was that selfish...YES...but unselfishly I had been there...I had been there for the appointments....the difficult conversations...the moments that defined a trajectory...selfishly I wanted to finish our journey together.  And guess what...that is exactly what I got.  Like so many times before he surprised me...he pushed through...instead of July it was January...just like Erik to push it beyond anyone's expectations..."that's what she said" was his favorite saying and that is just what he proved between July to January..."that's what she said," NOPE, "that's what he said."  HE SAID he would do it in his own time...he did just that!  That is why I cried tonight.  I cried because he waited...I cried because I was present....I cried because I see in these present hurried days that presence is few and far between and I.need.to.do.better!  Better for me...better for Erik...better for my future self.  The end.  Here's to the present 💔💗 Thank you Erik for teaching me to be present...in everything 💕💕💕

Seeing the other Rainbow

Well to say the last month and a half has been a roller coaster might be the understatement of the century.  So many changes...in the end ALL for the best...although in the midst of the storm it is really hard to see the rainbow.  There is hurt and confusion and questioning...questioning of what you thought you knew...who you thought you knew...what you thought the plan was and where you were supposed to be, but in the end He always knows best and goes before us...especially when the storm clouds are the thickest and He knows we have lost our way.  Over the last month and a half I have done a lot of self reflection and re-evaluation of my priorities.  The result has been more than I could have ever asked or imagined.  Things are still evolving and we are still working out this new normal, but we are so thankful and blessed.  I have people in my life who continue to stand beside me and encourage me even when the despair is so thick it's hard to breath.  They remind me of His mercy and love...and that He carries me through because I am His.  Romans 8:28 is my life verse and my loving merciful God continues to show me how true that verse is.
Driving home from a meeting in Columbia on Wednesday I got to see this amazing double rainbow.  I thought about how reflective that is of these times in my life.  The first rainbow is so bold and bright and it is the first thing my eyes go to, but there in the background is the second rainbow.  I get caught up on the first thing my eyes go to...the thing that makes the most sense...but there in the background may be something that doesn't stand out as much...isn't as bold and obvious...but holds so much of what He has planned.  I just have to refocus on what is just as much in front of my face as that big bold rainbow.  Landry told me yesterday that she thought it was so crazy that our eyes interpret color and their boldness.  Our eyes have control when mixed with light to make the colors appear the way they do.  It is all about focus...how is that any different than the choices we make in our lives?  Where we put our energy and focus is where we see the color.  The true test is being able to be still and listen to what He is telling you...where He is calling you.  That is what this last month and a half has been about.  He closed a huge door and opened doors to more than I could have asked or imagined.  Again and again He does that for this not really great at focusing or listening sinner girl.  I will be forever thankful for that grace.
I can officially now say that I have started my own business doing what I love to do and feel called to do...advocating, educating, and supporting Palliative and Hospice Education.  Palmetto Palliative Care Consultants, LLC has been a far off dream for a while now, and because doors were closed this door finally opened.   We cried and celebrated yesterday as this dream became official not only in our minds but legally as well.  The even more exciting part of all of this is because of the flexibility of operating this business on my own I have the ability to pursue other opportunities as well.  I am teaching nursing clinicals for the college I was blessed enough to obtain my first degree from, and on the horizon are two amazing opportunities to expand on this formal teaching position.  The first clinical I did I came straight home and told all of my people...that didn't even feel like work...this is where I am meant to be!
More importantly these doors closing and opening have given me the opportunity to be home.  Home with Landry...home to eat dinner with my family...home to support them in the everyday.  This has been the greatest gift of all.  I see mommas post all the time about how babies don't keep, and there has never been a truer statement.  They are ours for only a short time and we need to cherish every moment we are given.  My greatest accomplishment is being the momma of these two amazing girls God gave me.  All I am and all I do is for them!!

Answered Prayers

So you think you collect all of these letters behind your name and you've actually figured something out.  But the truth is you can have a whole alphabet soup behind your name and not actually know a thing.  I never really thought I had it all figured out...I am not that naive...but I thought I maybe had some things figured out.  Like the fact that I was doing what I was called to do and where God wanted me to be, but He tends to teach you big lessons in not so subtle ways.  Like the time He kicked me right in the gut and said okay your priorities are all wrong and I am going to need you to get it together.  I wasn't such a good listener when He had been talking and talking and talking in my ear letting me know this truth, but I continued to march along a path that He clearly didn't have planned for me.  So He taught this sinner girl a lesson in the best way He could.  He showed me that I am not all knowing...I am not the one who knows the plans He has...I am the one who is supposed to listen and submit and know when it is time to be what He is calling me to be.  So through a tough lesson and a painful process I ended up with today.
TODAY...Today was a good day...it was a day that I have prayed and hoped for...for a long time.  It was a day that a dream was realized...actually several dreams were realized.  I am so thankful...and so blessed...so blessed to be the daughter of a forgiving and graceful Father.
Today I taught my very first nursing school clinical.  I taught wide eyed...okay deer in the headlights...brand new nursing students...and at the nursing school that I was so lucky to graduate from.  The craziest part of today is that I taught two students who represented separate parts of my nursing career.  One student was a medical assistant when I worked my clinical coordinator job for pediatric neurosurgery and one was the sister of a patient who I was so blessed to care for from early diagnosis to her death not too long ago.  It was a very real and tangible reminder of why I chose to be a nurse...why I love what I am blessed to do everyday and for that I am so completely thankful.  Sometimes you just have to be reminded why it is that you have been working so hard and so long at your passion and your career.  Today was a very real reminder.  A real reminder that He knew that I needed.  I am so thankful He knows His daughter so well.
These last several weeks have been full of questioning and wondering and heartache...but in the end and in my mind the whole time I knew that He had a much bigger plan in place for me and I just had to be still and listen.  He never gives us more than we can handle...we may think we are weak but He is always strong and carries us through whatever situation we are presented with.  These footprints in the sand have been solo and they haven't been mine...they have been His...and He has carried me the whole way....not just these last several weeks...but for a long time now.
This crazy journey may not look the way we think it is going to look, but He always has a plan and it is always the best plan.
TODAY WAS A GOOD DAY!  Thank you Lord for your presence and provision...ALWAYS!

Growing Up...

The funny thing about having a child grow up is that you grow up.  I thought by the time I had spent a little more than 38 years on this planet that I had done a lot of growing up.  Through getting married, having children, earning three degrees, and the consistent hills (okay mountains) and valleys, that I had packed a lot in these years blessed to me BUT then you watch your babies grow and grow and grow...and no matter how much pleading you do...no matter how many times you stomp your foot...or use your best mom voice...they do it anyway.   They grow and spread their wings and leave.  And you feel a little lonely.

Not because you don't want them to do all of those things, but because you wonder how did it go so quickly.  Were we not just in that Trident Hospital birthing room welcoming (painfully) that joyful bundle into this big wide world and wondering how in the ever loving hell we would ever shape a person to be good and functioning and have a loving heart...a heart that would break for those around her that didn't have the things and the love that she had.  But you know what....we did it.  Don't ask me how...or to write any kind of parenting book...because mine would include A LOT of cussing and apologizing and grace...NOTHING perfect...NOTHING textbook...BUT there was love and A LOT of it for that not always so sweet baby angel that I pushed out into this world in that Trident Hospital birthing room.

But the growing has this funny way of continuing to happen...not just for her or her sister...but for me.   I have recognized in me a need.  A need to know that I am loved and cherished and cared for.  It is the strangest juxtaposition....really it is.  I have always worked very hard to compensate...to make those around me immensely happy.  Without a shadow of a doubt I hope my tombstone one day will read...She made the ones around her feel immensely happy and always loved.  I think that for the longest these feelings would creep into my psyche and I would of course...like any good, well raised, southern girl...push them back and soldier on.   I have babies to raise and a husband to care for and houses to keep and careers to excel at and the list goes on and on, but you know what I realized (maybe not such a long time ago) is that I am worth it.  I am worth feeling like I should have those things that always creep up in this ever moving crazy mind of mine...loved...cherished...cared for...these are not just wants...they are needs and that is the raw honest truth.   There is no guilt there...no guilt for speaking my mind...no guilt for knowing what I need...not just what I want but what.I.need.  I have always said that what I wanted for my girls was to know that they are always enough...always...no questions asked.  I truly believe when you know you are loved...not for what you've done or accomplished but simply because you breath air...then you know at the bottom of your soul that you are enough.  Being their momma has been the single biggest pleasure of my entire life...God's greatest gift without question.

So as this season comes and goes I can say that I may be the most thankful for this time of my life. It has been hard...actually I think maybe I should come up with another term for this kind of hard...four letters doesn't seem big enough...even if some of my favorite words have four letters...refer back to the part where I said the thing about cussing :) but I digress...I am so thankful for the lessons of this season and the self awareness it has brought about.  But mostly I am thankful for the clear view of my worthiness that the sweet baby bird flying out of this coop brings.  She may not realize it....and someday I hope she does and takes great pride in it....what she has taught me.  My girls have taught me immensely more than I could have ever taught them.  They are my life song...my greatest joy...and if I never have another blessing for as long as I live they will ALWAYS be more than enough.

Year of Freedom

Freedom has so many different connotations.  I had thought that this year my word was going to be "Stillness" but as I've prayed over it and really listened to God speak to my heart I feel that He is laying the word FREEDOM heavy on my heart.  That one word has so many different meanings for me.  So many that even writing this blog post makes tears come to my eyes on what freedom in my life could really mean.  
I have been a slave to so many things throughout my life. Slave to perception...slave to comparison...slave to temptation...slave to jealousy....slave to my expectations and desire.   All of this self imposed slavery has left me with very little margin for the pieces of my life that should get all of my attention.  It has left very little room for what God is calling on me to do for His kingdom.  It has left me chained to unrealistic goals and an unrealistic perception of how things should work.  I think what this prayerful consideration has made me most aware of is that I have taken over my life and turned away from listening to His calling and only paid attention to my own.  This has further entrenched me in this slavery.  
So this is my year of FREEDOM.  Freedom from all of these binding ties.  Ties that keep my hands full when my hands should be empty and outstretched to what He has to fill them...ONLY WHAT HE HAS....not what I think should be filling the spaces.   This morning my devotional verse was Matthew 12:9-14.  

"Going on from that place, he went into their synagogue, and a man with a shriveled hand was there.  Looking for a reason to bring charges against Jesus, they asked him, "Is it lawful to heal on the Sabbath?"  He said to them, "If any of you has a sheep and it falls into a pit on the Sabbath, will you not take hold of it and lift it out?  How much more valuable is a person than a sheep!  Therefore it is lawful to do good on the Sabbath."  Then he said to the man, "Stretch out your hand."  So he stretched it out and it was completely restored, just as sound as the other.  But the Pharisees went out and plotted how they might kill Jesus.

Lord there are so many pieces to pull from this part of your word.  The first truth being that you are always present to protect and restore.  Just like the shepherd to the sheep you save us continually.  Lord of all of your blessings I am so completely thankful for that fact.  This sinner needs saving------always.  The other truth is that all we have to do is stretch out our hands----you are waiting----waiting for our willingness to turn from the things that are not of You and focus our sights on You and Your plan.   Lord I pray for the clarity in my vision only You can provide.  Thank you Lord for Your patience and love.  The third truth is that the devil will always be plotting our destruction.  He also patiently waits and circles like a lion to its prey----waiting to attack the vulnerable spaces in our lives.  Lord I pray for the strength only you can provide to resist the constant temptation of this world and the devil.  Lord I pray for a deep abiding fire for you and your calling----the FREEDOM only You can provide!!

Amen!!

Tears upon tears upon tears

Tonight I cried...I cried and I cried and I cried.  I probably cried more than I have cried in a very long time.  Madie took her first trip to Greenwood by herself.  She was supposed to being going ahead with two of her friends that want to go to Lander with her and we were going to follow up a little later to meet them there, but things happen.  Things happened today...it took me an hour and a half to get to Folly and I was exhausted.   I didn't get in from my Biloxi trip until 11:30pm last night and well to put it mildly my body has had enough.  Between flights and bronchitis and stress and babies being seniors and moving and all the feelings I couldn't go another step.  I called Madie...I called my grandmother...I called Landry...Dennie and I talked and it was decided that we would let Madie do this trip on her own (staying with my sweet Sally Faye of course) and we wouldn't go...we would stay behind.  I convinced myself that this was what I wanted.  I needed the rest...my body did...my mind did...and soon enough she would be doing this on her own all of the time.  But those things are easier said than done.
In 195 days my girl will be graduating from high school...in 274 days she will starting classes as a freshman in college...
I have to pause here because this is what brings the tears.   
Tonight I sat on this screened porch and listened to the waves pound on the shore and I cried.  I cried for how proud I am of that baby of mine.  The amazing young woman she has become...the fact that when it really comes down to it I am not worried for her.  She is brave and smart and head strong and persistent and marches to her own beat and loves fiercely and defends even more fiercely.  She is her mother's daughter.  She has my eyes and my spirit and my mouth and my hard head and my heart for those less fortunate than her.   She has a heart to help and lead and doubt and wonder and fiercely love.    How did I get to be her momma.  When we think back on being 20 and 22 and finding out we were having her...not on our time but definitely in His plan...not when we were ready or prepared but when He knew we needed her....I am so very humbled.  I was chosen to be her momma and what an honor and privilege and struggle and joy it has been to watch her grow.  
Plain and simple...honest and true...I am not ready.  
I sobbed to Dennie on this porch that fact.  We reminisced about all the adventures when she was little.  We thought about our time in our little rental house sneaking back to watch her play at 18mos in her closet with her McDonald's play set...knowing fries would always be her food of choice.  We thought about when we didn't have two pennies to rub together but we got together enough money to take her to Disney World right before her 3rd birthday (so she would get in free).  She was so sick right before that trip...she spent 3 nights in the hospital and it was one of the scariest moments in our lives.  But as always she played by her own rules.  She didn't let a little hospital keep her out of Disney.  We laughed through tears as we thought about her telling Mrs. Frazier, her kindergarten teacher, that we were poor and didn't have enough money to go to the grocery store all because she didn't get potato chips packed in her lunch.  She has been our biggest challenge, our greatest joy, and our best version of us...she and Landry are by far the most amazing things we ever did.  No matter how imperfect we are God gave those two perfect angels to us.   There is no greater gift.  
Tonight...through the tears of joy and pain...through the memories...I am thankful.  I am thankful for a God who knows me better than I will ever know myself.  He knows the pain in my heart that at the same time brings me my most precious joy.  That precious red headed is one of two of my greatest accomplishments.   She will forever be my baby....