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Wednesday, October 24, 2012

Consistency

Consistency

 
If there is one thing I am grateful for in pediatric healthcare at CHNOLA it is the consistency that has been demonstrated repeatedly.  CHNOLA sets the bar for what outstanding pediatric care looks like.  It is a team effort that begins with admissions or the ER dept. and trickles all the way through to the physicians, nursing, child life, dietary, housekeeping, etc.  It is like a finely tuned instrument that plays beautifully together. 
 
This is not just an observation from an audit or outside visit by a private firm.  This is what is reality for a patient and their family while needing care or services.  The days have turned into weeks  of time that has required us to "live" at CHNOLA off and on for 5 years.  I have observed and taken note of the good and the bad.  The bad has a much smaller column.  There was no one to put on shows or be on their best behavior because they knew someone was paying attention.  It is just what each of these employees do day in and day out because they choose to.  It is what comes from their heart.  It is what makes them wonderful!
 
There is no schedule when you are in the hospital and there is certainly no rest.  But you can just about set your watch by the times your nurse will enter to do medications or vitals.  If you have 4 hour vitals you can rest assured the nurse will not be 2 hours late to get them.  They are typically church mouse quiet when coming into a child's room during the late hours of the night so as not to disturb unnecessarily. 
 
These are all things that make good even better.  As a parent these are the things that me me appreciative.  As an advocate these are the things that make me see the true and positive in such a chaotic world of healthcare. 

The Merry Go Round

 

After another week in the hospital it still feels like we have made very little progress.  Matthew began having issues voiding last Monday with extreme pain.  Another ultrasound revealed that he was not able to completely empty his bladder.  At this point urology was brought back in to take a closer look at the past 4 weeks of abdominal pain.  A VCUG was done on Wednesday which showed no strictures thankfully.  He was prescribed Ditropan and Pyridium to help with the bladder spasms and the burning.  They have been somewhat effective but have not totally rid him of the issues.  Here we are 5 weeks into his journey with continued daily abdominal pain, and issues voiding.
 
This is all very frustrating when all you want as a parent is to have your 10 year enjoy life as just that.....a 10 year old!  I trust in the care he has received and the course of action the doctor's have taken.  I would just prefer to have a definitive answer and a game plan to correct whatever his issue is.  We will return in two weeks for additional follow up and testing.  Next up is a Flow EMG test.  Maybe answers from this.
 
It has been 5 weeks since we began the Merry Go Round effect of in and out hospitalizations again.  The three year break he had from the hospital was great but certainly not long enough.  My sweet boy has spent over half of his life under the medical microscope. 
 
He had his first full day back to school yesterday.  Very long, trying day but he pushed through with great resolve.  Tired does not even begin to describe how exhausted he was last night.  Praying for more energy for him each day.
 
 


Tuesday, October 16, 2012

And Here We Are Again.....

 
We find ourselves back at Children's Hospital in NOLA yet again on this beautiful Tuesday morning.  Matthew was once again admitted after a day of excruciating pain during urination and inability to void completely.  The rational side of me knows that everything that can be done is being done based on the tests.  However, the mommy side of me knows that my son is hurting and having problems for some reason.  And it's not constipation!!! 
 
The nurse attempted to insert a catheter at midnight with no success.  Even going to the smaller gauge it was unable to be fully inserted.  His doctor's have rounded this morning and will be consulting with urology again to discuss sedating him to get it in and fully drain his bladder.  His heart is heavy and so is mine.  Just praying for some relief for him very quickly.  Four weeks is a long time.
 
On the positive side I can't even begin to say how thankful I am to have the amazing nurses that work on the 6th floor here.  They set the bar for what caring looks like.  They are patient care!

Monday, October 15, 2012

What's the Impact?

 

Unless someone has had to endure chronic illness either with themselves or a loved one, I don't think they can fully understand the impact.  It is a wave of emotions and circumstances well beyond anyone's control.  The impact is felt from an emotional level to a physical level.  It doesn't really matter if you are caring for an ailing adult parent or if you have a chronically ill child.  I, unfortunately, have both.  I have seen the impact from both ends.  The worry is indescribable.  The dread is certain. 
 
My heart literally skips a beat every time I hear my phone ring.  It is something so simple but I often think of the day and time when my heart will not jump when it rings.  I look with caution at where the call is coming from.  The familiar numbers of my parent's home or my son's school always make me hesitant.  I sigh and take a deep breath before I answer the call.  Usually it is minor but there is always that "what if" phone call.
 
Every night that I can actually lay down in my bed to sleep it is a blessing.  It is something that I close my eyes and say a silent prayer of thanks for the opportunity.  This is one of the selfish things that is missed the most while spending endless nights at the hospital.  The accomodations are as comfortable as they can be for a hospital but this is not saying much.  Hospitals are not designed for comfort in all aspects. They are designed with a purpose of healing.  That certainly takes the top spot in my book.
 
It's little things like this that I didn't expect when I was thrushed into the arena of the ill.  It's the little things that most take for granted on a daily basis.  Ten years ago I would have just assumed that I would always sleep in my own bed unless it was by chance that we were on a vacation.  Those days are short lived.  Don't take for granted the little things.  Stop and smell the proverbial rose.  You will miss the act when it's not there.

Friday, October 12, 2012

Because I Want to Help People!

 

Years ago when I worked as the Director of Admissions for a private college in their medical programs division I would always ask people why they were choosing to study in a specific field.  If I had a dollar for every time someone would reply "because I want to help people" I could buy a nice dinner.
 
This always seems to be the knee jerk response to the question.  I would usually try to dig a little deeper and ask them do evolve the answer.  I would ask some probing questions as to whether there was a personal experience or if someone they knew had been sick.  Typically there was a personal tie.
 
By the age of 5 Matthew had become quite an expert in the area of hypertension and kidney function.  The medical terminology he knows now at age 10 could rival some of the students that I once admitted into those medical programs. 
 
Words not typically found in the 10 year old vocabulary:
 
  • hypertnesion
  • renal artery stenosis
  • occulsion
  • hydronephrosis
  • Foley catheter
  • butterfly needle
Unfortunately for Matthew these are all words that are all part of his vernacular.  As we make our treks in and out of the hospital he continually amazes the nurses and doctors that have never met him.  Many of them ask him what he wants to be when he grows up.  Always anticpating that he will say a doctor.  And this is what his answer is.  Recently he has become more detailed in saying that he wants to be a nephrologist.  I asked him why he wanted to be a nephrologist and he said that he understand the kidneys and their function within the body.  I asked him in a relaxed setting at home out of the blue why he decided he wants to be a doctor.  His reply was simply....."Because I want to help people."  Those words have so much meaning to me coming from the heart of a 10 year old.  And regardless of what he does become in his future professional career, I know that he will always help people.  It's just his nature.
     

Thursday, October 11, 2012

Matthew had his follow-up with the pediatrician today.  She was perplexed as to why he is still continuing to have stomach pain for 25 days now.  We gave her a full run down of all that has happened since we last saw her two weeks ago.  She ordered a 3rd KUB to check the status of the constipation.  As luck would have it while we were there he had to urinate and passed another teeny tiny sized crystal like substance.  We were able to collect it and she sent it to the lab for analysis. It was very tiny and did not cause any pain coming out.  The KUB showed that there is still some amount of constipation.  Her suggestion is that we do a complete cleanse of his bowels and make sure this has absolutely nothing to do with the pain.  Needless to say it has been a "fun" evening.  Poor little guy can't catch a break. 

His pediatrician's office is also making the change to electronic medical records.  The whole process from the patient side was relatively painless.  We are fortunate in the sense that waiting at healthcare facilities is something we are used to and don't get excited if it's been 30 minutes and we haven't been called.  All in all it seems as though the entire office is learning the new system eagerly and patiently.  In the end it will be much better for them and the patient. 

Yes, It's a Global Issue

 
High blood pressure in children is not just limited to the United States of America.  This is an issue that can affect children in any region of the world.  Hypertension can affect children as young as three years old and it doesn't matter their age, gender, or nationality.  Hypertension does not discriminate.  Blood pressure monitoring is important for kids EVERYWHERE!  There are even certain areas that have been mentioned in studies as having higher than normal numbers of kids with high blood pressure.

Doing What I Love!

 
My first passion is blood pressure awareness for children.  My second is working with nurses and nursing students to help them find their excitement again.  I love to share Matthew's story and the impact that the nursing staff made on us along the way.  Always sharing the positive and the negative.  It is always amazing to see other nurse reactions to the horrible story of "THE NURSE FROM HELL!"  Thankfully she was just the minority of the numbers.  The majority have been amazing.  Any interested parties wanting info on my presentations please visit www.celestegoodwin.com.

What's Your Mental Image of a Child with

High Blood Pressure?

What mental image do you get when you think of a child with high blood pressure? Is it an overweight child playing video games? If you answered yes, you need to listen to this important message. Hypertension can strike any child at any age, of any weight. It is not just obese children. Media outlets have caused a lack of concern for parents who do not have overweight children. They have began to think that there is no need for bp screens for their children. Hypertension in children is always tied to obesity by the media. This is not always so. www.bloodpressure4kids.org

Sign of the Times

 

Matthew has a follow-up with his pediatrician today from his hospitalizaton last week.  As I was scheduling the appt. I was informed that due to the office changing to electronic records we need to arrive 45 minutes before our scheduled appt. time.  Additionally, we should plan to be there for up to 2 hours.  Needless to say no one is looking forward to spending 3 hours at the doctor.
 
 
It is completely frustrating for the offices to make this switch.  Through visits with my elderly father to his ENT we have encountered the dreaded "switch."  While we were at Children's last week we were informed that they will also be making the change to electronic records later in the year.  Definitely a sign of the times.  

Tuesday, October 9, 2012

TOMORROW IS A NEW DAY......

It has been a tremendously busy day both personally and professionally.  There are never handbooks given to new parents when the first baby is born.  You really fly by the seat of your pants.  I feel like I do alot of that these days.  Being prepared to have a child that has been as ill as Matthew has for 5 years is not something that just happens.  There is no way to prepare for it.  You just do what feels right in your heart and I lean on my faith daily.  Often the emotional struggles of illness are just as hard as the physical.  Today was one of those days of being tested as a parent to handle the emotional crisis.  I think we fared well.  All is peaceful in the Goodwin home tonight and both boys have been asleep since 8PM.  Praying for a good night's sleep for everyone.  I go back to my frequently used saying....."Tomorrow is a new day!"

On the professoinal front I did some further research on the data I found last night.  Specifically data related to my home state of Louisiana.  I blogged last night about the different health screening criteria by varying states.  It is baffling to me to see that there are indeed states in this country that put children's health and safety into the highet regard as to how it pertains to their education and then there are others that are way behind in the game. 

Basically there are three screening programs that are listed on the National Board of Education site that each state could possibly use. The only screening programs that Louisiana has in place are for hearing and vision.  There are no health/medical forms that need to be submitted other than immunization records in order to register for school.  Here is what is required:


  • An official birth certificate (children born in Louisiana will receive a 15-day grace period, while children born outside Louisiana will be given a 30-day grace period to produce a copy of their birth record.);
  • A record of immunization; and
  • An official Social Security card. If no Social Security is available, the student shall be assigned a state identification number.
Why is it that we have several states in this country that require a medical/health evaulation by a licensed physician that INCLUDES a baseline blood pressure reading and there are states that do not.  A child that has an underlying condition such as asthma, diabetes, hypertension, etc. could have their education greatly affected.  Symptoms that may seem superficial could be indicative of more serious issues.  Hypertension for example is called the silent killer because there are often no outward signs or symptons until it has escalated.  A child with continued headaches or dizzy spells will not be able to function in class and perform at their peak.  Therefore, they will not be learning at their full potential.  
 
It is time for a change.  There are some goals I have made and will be moving forward.  I will not rest until every child in this country is receiving routine bp screens.  They need to start by age 3 but a beginning point can be with school health screenings required to start kindergarten.  This is a movement that must move forward.  

 


Monday, October 8, 2012

There is one cause that I am extremely passionate about and will be until the day I die. Blood pressure awareness for children and the need for increased screenings.  It is still baffling to me that in this day and time our children still do not receive routine bp screens by all healthcare facilities beginning at age 3.  This is such an important piece of the medical puzzle.
 
Facts from the National Association of State Boards of Education regarding health policies for each of the 50 states. There are three main health screenings that could possibly be required for a child to start school:
(1) hearing/vision
(2) chronic health conditions
(3) body mass index screening
 
Most states have at least one of the three screenings as a requirement before a child enters school or at a specified interval. It is disappointing to learn that the following states do not require any of the three screenings: Arizona, Hawaii, Idaho, Minnesota, Montana, North Dakota, New Hampshire, South Dakota, and Vermont.

This means that a child who does not get blood pressure screens as part of well child visits would not even have the opportunity to have a bp taken as a requirement for part of a screening to start school through a chronic health condition screen or BMI screen.

I would like to point out that one of the states that stood out for a very proactive approach in keeping their kids healthy was Rhode Island. If you are a parent with a child in any of the above listed states and can tell us about any other required medical/health exam for school aged children we would love to hear it.
Speaking during workshops for nurses and other hospital support staff has allowed me the opporunity to not only develop a deeper understanding for why people choose healthcare, but it has also given me the chance to heal emotionally from the turmoil Matthew's medical condition presented to us.  He would have never asked to be sick, but unfortunately God had other plans.  I have been fortunate at two separate workshops in the Baton Rouge area to have the chance to say THANK YOU to two of the very nurses that I often speak about.  They exemplified what caring looks like from our perspective.  Neither of them ever realized how much they impacted one family with what they do every day.  Nothing more, nothing less.  Just do the job they love and do it with pride and compassion.


Have you had exceptional patient care by an outstanding nurse?  I would love to hear your story.  Please feel free to email me at info@celestegoodwin.com.  Now on the flip side, have you had patient care for you or your child that was deplorable by a nurse or other staff.  I would also like to hear this as well.  The information that is emailed to me is kept confidential and will not be posted to any page, blog, or site with out your permission.  I am just curious to hear some of the other great or not so great stories of nursing care and the impact it had on you.

What it's all about


Patient Care VS Health Care

One thing I have witnessed first hand is what works and what doesn't work when it comes to patient care.  This is true of various settings such as inpatient, outpatient, private practice, lab, etc.  There is one common element that is found far more than anything else. A true and genuine love of children and helping them to feel better.  It is such a peaceful feeling to be able to say this.  Now, that is not to say that with every wonderful adventure comes some adversity.  This proves true of patient care. 

I think there are two terms that are often confused in terms of medicine.  Patient care as opposed to health care.  My personal belief is that patient care is a much more specific, centered, act of directly impacting someone's health.  There is good patient care and then there is over the moon patient care.  Personally, I would rather see over the moon patient care in every instance.  This is just not so.  Too many variables play into this. Many of which are very easy to overcome with a little work and understanding. I have learned that first and foremost if a nurse, lab tech, radiology tech, doctor, housekeeper, etc. brings baggage with them inside the hospital doors when their shift starts then patient care will suffer. If their head is not in it, then someone will be affected. 

I have spent a great deal of time over the past few years sharing Matthew's journey and struggles with hospitals and nursing schools in hopes to bring a better understanding of how pediatric blood pressure monitoring has been viewed.  And also to show a side of caring from a patient's perspective.  We have encountered literally 100's of nurses in the course of 5 years.  Countless physicians, residents, med students, attending physicians, and fellows.  Numerous lab and radiology techinicians.  Each of them made an impact on us.  Some good, some horrible.  The words and actions of those that made a bad impression could have been changed in order to leave a different impression.

How did I end up here?  Well, it wasn't by choice.  It was by destiny.  My life prior to March 2007 does not have much resemblance to what it is today.  Who can ever truly know what there life will look like in 5, 10, or 15 years?  No one.  I think we all try to dream about the path we will be on but there is a much greater power in control of what really happens.  At least that is my own personal feeling. 
 
There is no parent I have ever met that would want anything ill to happen to their most precious gift, their child.  Myself included.  I remember being pregnant with Matthew and sobbing while I watched the St. Jude shows.  I always pledged my support and my heart was ripped at the thought of what despair those parents faced with such sick children.  Rubbing my belly I prayed that God would keep my unborn child healthy and safe until I could hold him.  Feeling as though I could protect him from the world after he was born if I could just get him in my arms.
 
I guess this held true for 4 1/2 years until the time came that I felt more helpless than I had ever felt in my entire existence.  Matthew's little life was a that of a typical little boy he lived in a growing family.  We added his little brother, Conner, two years after Matthew was born. In 2007 we had just finished building our dream home, Matthew started preschool, and live seemed to be moving in the direction my husband and I had dreamt about since we said "I DO!"
 
March 2007 proved to be one of the most trying months.  Matthew had been treated off and on for most of the winter with recurring ear infections and strep throat.  It was decided that he should visit an ENT and have surgery.  On March 28, 2007 Matthew left my husband and I as a child who would return forever changed.  I have often wished I could rewind back to the 30 mins prior to surgery so I could look at the innocence of that sweet 4 year old's face.  This is an innoncence he would never know again.  Something so simple as a surgery to have tubes placed in his ears and to have his adenoids removed.  It is done by the 1000's each day with minimal complications.  However, this was not to be the case for Matthew. 
 
He began to have severe vomiting after being home for a few hours and he had to be brought to the emergency room. He was subsequently admitted after spending over 6 hours in the ER. Upon admission his blood pressure was 195/135. This was potentially life threatening for a four year old child. I want to note that his blood pressure was not taken one time during the entire 6 hours he was in the emergency room. Hard to believe?  Have you ever really given any thought as to whether all emergency departments take a child's blood pressure.  There is an easy answer. No, not all ed's take bp in children unless they are over 12 or 13 or they come in as a trauma patient.  (We are changing this!)
 
After several readings of dangerously high blood pressures he was admitted to the PICU. For a parent, you NEVER want to see your child in that environment. Matthew was gravely ill and we came very close to losing our baby. I can remember his dad and I standing at his bedside with 6 or 8 of the staff trying to get him to wake up. Pleading with anyone who would listen to my prayers to let my son keep fighting. Feeling helpless and not understanding how different my life was from a week earlier. Finally, his eyes opened and he was stabilized for transfer. 
 
After six days he was transferred to the PICU at Children’s Hospital in New Orleans, LA. He was then diagnosed with renal artery stenosis. In simple terms, there was a blockage to the main artery to his left kidney that was not allowing sufficient blood supply. This was causing the severe hypertension (high blood pressure).
A month later in April of 2007 he had a balloon angioplasty procedure to open the artery. A temporary fix until he could get older and stronger. In December of 2008, two days before Christmas, Matthew underwent an auto kidney transplant. This became a necessary measure to save his life because the daily hypertensive medications were no longer working to control his hypertension. His own kidney and the blocked part of the artery were removed and his kidney was then transplanted back into him. It was a success. He was the first pediatric patient at Children’s Hospital to have this surgery performed by Dr. Sander Florman who is now at Mt. Sinai in New York. We received the best Christmas gift that year, for our child to have two working kidneys. Matthew is very fortunate to have received outstanding care from all of his physician's. We are very grateful to Dr. Diego Aviles and the nephrology dept. at Children's as well as Dr. Florman. Dr. Florman and Dr. Aviles agreed to attempt something with no guarantees to give Matthew the best chance for a good quality of life. True heroes to us.
 
In September of 2009, Matthew was again admitted to the hospital following a diagnosis of hydronephrosis. This meant there was a blockage due to scar tissue from his transplant surgery that was causing urine to back up into his kidney. Again, he had to undergo major abdominal surgery to remove scar tissue. He spent another 18 days in the hospital. It was during this time that I decided that something had to be done. Something good MUST come from all of the suffering that my child and my family has endured.
 
I have spent a lot of time researching and asking questions only to get more and more frustrated that such a simple, non-invasive screening tool is not being done on a routine basis in every single pediatrician’s office, emergency room, or after hours clinic that treats children. I have had far too many parents tell me their children’s doctor doesn’t do regular blood pressure screening. 
 
The NPBPAF  (National Pediatric Blood Pressure Awareness Foundation) was born in my mind during that last hospital stay and through the extensive hard work of some of the most amazing people I know the NPBPAF has become a reality. I knew that I could not let another child or family go through the excruciating pain we have. 
 
I now know that Matthew was born with renal artery stenosis and that a blood pressure reading at least by the age of 3 would not change this. However, it would have been caught nearly a year and a half earlier than it was and he could have possibly had much less invasive intervention early on. The care could have also been provided in a non-emergent situation. He may not have needed to endure the auto transplant or the subsequent surgery to repair the scar tissue. In the case of renal artery stenosis and other renal conditions, sometimes the only sign there is a problem is with an elevated blood pressure reading. As is the case in several other critical conditions that can affect the heart or other organs. 
 
There is a very simple solution to this national health care problem. Children need to have regular blood pressure screenings at every well child visit beginning at the age of 3 as is recommended by the American Academy of Pediatrics and the American Heart Association. It takes less than 60 seconds, it is non-invasive, and causes no pain to the child. There is no rational reason I can find why health care providers shouldn't do it.
 
Hypertension crosses all boundaries. It can affect any child regardless of race, age, or gender. This is not any obesity only issue.   Please join us and help support the work of the NPBPAF and know that your kindness will potentially help save the lives of children across our nation. Remember, KYKN.....KNOW YOUR KID'S NUMBERS!