Follow by Email

Thursday, January 31, 2013

There is Still Plenty of Change Needed

It's been a few days since I have made an entry.  In South Louisiana we tend to fluctuate in extreme temperatures this time of year.  This equates to sick children.  Last week it was Conner with gastroenteritis and this week it is Matthew with croup.  Both had visits at separate times with their pediatrician's office.  Due to scheduling we were unable to see our normal pediatrician. 

Even after all of the education, advocacy, and pleading to make sure EVERY medical assistant in the office knows that blood pressure MUST be included in vitals, we had a new MA that failed to take his bp until I asked for it.  Now mind you, their office has made the dreaded change to electronic medical records which clearly asks for a bp reading.  It was manually over rode.  After a brief explanation she clearly understood the importance of a bp reading not only to me but to every child that comes in.

Now, this week as soon as Matthew started coughing off we went to the doctor.  Same as last week we happened to need an appt. on the day their regular doctor was off.  We were lucky enough to schedule with one of the other pediatrician's that we are quite fond of.  He has always had an interest in Matthew's history and happens to know his nephrologists in NOLA due to the fact he did some of his training there before going into private practice.  We discussed the pros and cons of oral steroids as opposed to an inhaler.  We don't like to put anything on board that will make the kidneys unhappy.  Matthew's visit was different than Conners in the fact that the medical assistant took his bp without being prompted.  A plus in my book!  When she took it the reading was 100/80.  This seemed like an odd reading for what his pressures run even when he doesn't feel good.  I mentioned it to the doctor and he glanced at the computer and said he only looked at the systolic and saw a great number so didn't even look at the bottom number.  He agreed that it was a different spread and called her back in to repeat it.  Again on the right arm and got the exact same reading. She took it on the left arm and this time got 101/82.  Diastolic was even higher. 

The doctor was being as helpful as possible and fully knows that we try to stay on top of bp topics as it pertains to children.  He suggested the elevation could be from him being sick.  This is totally possible and probably accounts for the high reading. He suggested that we just "stop by" a Walgreens or Walmart and retake it in a few days on one of the machines in the pharmacy.  HUH?????  Are you kidding me?  No child should ever, ever put their arm into one of those machines.  First the cuffs are sized for adults.  Secondly, how often are they calibrated?  I don't even recommend for the adults I know to use those unless it is absolutely necessary. 

I allowed him to finish and then said, um no thank you!  He will not be using one of those machines and before I could finish he said that as soon as the words came out of his mouth he realized he should not have recommended that.  He did say that he has recommended older, larger children to give a quick  check using them but realized that in Matthew's case or that of smaller children they should not use them. 

All was well and resolved before we left.  But this just affirmed to me that there are still many, many pediatricians that still need extra knowledge on bp and how it pertains to kids.  After all, this should be one of the main vitals.  They should all be versed on the importance to the safety and lives of their patients to know what is a good number, what is not, when to recheck, what methods should be used to do a recheck, and when to say something is not right. 

Until then, I will continue my endless quest to tell anyone that will listen how important this is.  Until we have all practitioners on the same page parents must also be educated and know what to ask and when to question. 

Now, if you are a physician please, please make sure you first and foremost have a bp done for every child.  Second, look at the numbers.  And look at them close!  Know when to recheck and what is OK.  Please don't ever dismiss an elevated reading to white coat hypertension without a recheck.  Third, never ever tell a parent to bring their child to Walgreens or Walmart to use one of the stationary bp machines that are designed for adults. 

KYKN......KNOW YOUR KID'S NUMBERS!   www.bloodpressure4kids.org
www.celestegoodwin.com

Thursday, January 17, 2013

I like to ask alot of questions!

Due to circumstances beyond anyone's control I have been thrust into medical settings more than I would have liked the past 6 years.  First with Matthew and then with my dad.  I have learned alot from observation.  I chose to view the negative situations in a positive way.

In October of 2011 my dad underwent a heart cath and the following week was diagnosed with congestive heart failure.  He also suffers from severe restrictive lung disease due to his work environment for 30+ years and his exposure to asbestos and other chemicals that have literally fried his lungs.  We honestly did not think my dad was going to be able to pull through that cold November night we called 911.  During the course of his hospitalization other health disparities presented that I needed to educate myself on.  Daddy was also diagnosed with stage 4 kidney disease and at the time was in active renal failure. 

I am a "need to know" kind of girl.  The more educated I am on a situation the better I feel.  His doctors and nurses were always extremely kind in answering questions we had.  Just as I had with Matthew, I kept a little black book for daddy as well in the hospital.  There were so many organ systems being affected it was hard to keep up with.  I have learned that you must be there to advocate for a loved one when it comes to their healing.  There has to be someone to ask questions.  There has to be someone to double check.  Health care employees are human just like you and me.  Mistakes do happen.  But I know personally that many have been prevented because of the advocacy I invoke and that of my family members.

Since most of this was uncharted territory for me with new conditions I would do everything I could to educate myself along with the help from his doctors.  I feel it is vitally important to know the appropriate medical terms pertaining to a certain condition if you are coming from outside of professional health care.  If we took him to the ER and tell the docs, "Well, he is just old and sick and can't breath good."  How long do you think it will take them to go through records, and examinations to determine his background and assess his condition?

As we would learn about one condition we could relay this information to his next specialist.  All of the organ systems work together and therefore there must be cohesiveness with his doctors to appropriately treat him without causing harm to another area.

I want to be able to do anything and everything I can to help in the care and healing.  This means being educated and being a partner for the provider.  In dealing with so many doctors and nurses we have lost count I am thankful to say that every single one of them has been grateful to have educated partner advocates to help in the care of their patient.

Wednesday, January 16, 2013

Why would my child need a little black book?

If you should ever be the unfortunate parent of a child who requires hospitalization there is something that ranks in the top 3 things that you need to bring with you.  First is your toothbrush, second is a good pair of socks.  And third, and probably most important, every parent should keep what I like to call a little black book.  In this day and time of technology you may not need an actual physical notebook, but if you don't have all of your tech gadgets with you grab a little notepad and pen to stick in your bag. 

This book should be at your fingertips 100% of the time.  Even if you are not someone who has ever journaled.  It could prove to be your single most important tool and 2nd set of eyes and ears at a time when you are mentally and physically exhausted.

Now, you may ask what to put in the book.  One word....EVERYTHING!  Log anything and everything that you feel may be important to your child's care.  This could be doctors who come in, tests being ordered, medications that are prescribed, and any changes you note about your child that could help the pros.

Prior to Matthew getting sick I had never been someone who journaled on a regular basis.  Besides the typical 12 year old girl stuff that I did many moons ago.  The night that Matthew went to the ER the very first time when his journey began I pulled out my small planner.  This was a planner I used to keep dates organized for day to day stuff.  While waiting for the first nurse to come into his exam room something came over me and made me remember that in the back of the planner was a NOTES section.  Very tiny, small lines with not much room to write.  Nonetheless, it was space. For a reason that to this day I still can't explain I asked the first nurse for her name and logged it.  I then made notes with times, etc. of the different things she was doing for him such as starting an IV, medications given, and reactions that he had.  At the time I had no earthly idea why I was writing all of that stuff down.  (In my mind, I was still thinking this was a reaction to anesthesia and he would get some fluids and be on his way.  Little did I know!)

As we continued upstairs after the doc decided to admit him, I continued to journal.  Over the course of the next week I learned quickly just how long a body can go without sleep or much food in order to survive.  I did not want to leave Matthew's bedside in case there was a change or he needed me.  Even through the overwhelming feeling of exhaustion I continued to log down anything and everything I felt was pertinent to his care.  By this point I dismissed the urgency to write down info to the notion that in my extreme tiredness I would not remember something later on that could be crucial.  It could have been the lazy side of me saying that rather than trying to obtain medical records later if I had a question about a procedure or medication I would have it at my fingertips.  Who knows why.

All I do know is that the notes section of the little black book that I carried with me became filled with scribbled information.  I had a record of every nurse that came into contact with him.  And the tests that were ordered early on to try and understand why he was so critical.  I had never given that NOTES section a second glance since I bought the planner.  To be honest, I didn't use the calendar on a regular basis.  Just for the super important dates I was scared I would not remember. 

This little book proved to be the most valuable tool at helping me to see in print the things that I could not have possibly remembered without looking at it.  It was invaluable by allowing me to be the most effective patient advocate for Matthew and be his team leader when it came to his care.  The doctors were in total control of his health and healing but I was his team captain and cheerleader.  My husband and I were the ones that needed to be able to answer the questions posed by one physician to the next.  This little black book allowed us to know in a glance what tests had been ordered and by who, and what his reactions to different medications were. 

One thing I have learned over the past 6 years is the power of information and how amazingly complex and busy our lives can become.  This brings with it the need to keep organized in order to keep your sanity.   As the years have gone by my little black book has been upgraded to keeping notes on my laptop or phone.  But, I keep that original little black book in a safe place in my office.  From time to time I pull it out and read over those early notes about how sick my baby was.  It offers me a time of reflection to give thanks and praise for how fortunate we are to still have him with us today.

Tuesday, January 15, 2013

Don't Fudge on the Numbers!!!!

Try on this scenario for size.  If this happened to you how would you feel?  Would your trust be shaken?  Would you have complete faith in the patient safety of a facility like this?

A mother insisted that a blood pressure measurement be taken at a well child visit.  The health care facility does not yet do this automatically.  The health care employee appeared a little hesitant to do it.  There was no digital machine so it had to be done manually.  Initially an adult sized cuff was brought out.  The mother had educated herself enough to know this was not an inappropriately sized cuff for her 4 year old daughter.  The nurse then got a smaller cuff.  After taking the pressure she smiles and says it is perfect, 120/80.  This mother's heart sank knowing that this was not an acceptable reading for a 4 year old. The mother asked if she would give her a few minutes and repeat the measurement.  When asked why because her reading was perfect the mother explained this was not a "perfect" reading for a 4 year old female.  The employee became a little embarrassed and said she would have someone else repeat the measurement.  Another employee came into the exam room and repeated it.  This time it was 90/60 which was much more acceptable.  This certainly gave relief to the mother.

In this instance you can only insinuate what truly happened.  Did the employee "fudge" the numbers because she didn't really know what she was doing?  Was the child a little apprehensive and this caused her reading to go higher?  Either is possible, but after having two similar stories relayed to me in the past week of manual bp's being taken with unusual numbers for the patient it leads me to think that there are more instances of employees not giving true and accurate blood pressure assessments through manual cuffs.  We do rely heavily on technology in this day and time but every hands on employee should know how to take an accurate blood pressure manually. Further more, they should all know what sized cuff is correct and what is the "normal" range for everyone.  This includes children who have a range of acceptable values based on their age and gender. 

To most this may not seem like a big deal but I am here to tell you that it IS a big deal.  A blood pressure measurement is one of the most important values a doctor can obtain in order to provide a correct assessment of a patient.  A bp that is too low or too high can be indicative of many issues.  It is truly one of the most important pieces of the puzzle.

Education on the appropriate range and knowing when to repeat a pressure and when to dismiss it can make all the difference in a patients outcome.  My 4 1/2 year old son had his first bp taken at a pre-op appt. His systolic reading was over 130.  The nurse simply dismissed it as him being nervous.  She did not repeat it before the visit was over, nor did she alert the doctor.  His pre op sheet was signed and he was cleared for surgery.  This was at a time before I was uneducated on the importance of this.  This one act nearly caused my son his life.  He should have never been cleared for surgery to have tubes put in his ears.  What's the old saying, hindsight is 20/20?  So very true in this case.  It happens but we can change this.

KYKN.....KNOW YOUR KID'S NUMBERS!!  Know what is acceptable for them and know to ask questions.  The parent is the best advocate a child has.

There is no bigger health care employee cheerleader than me, but I know that there are mistakes that are made.  It is part of being human.  But don't let these mistakes happen because of inadequate education or preparation.  If you are  not sure, then say so! Get back up and make sure the patient gets the absolute best care possible.  It could mean the difference between life and death.

www.bloodpressure4kids.org
www.celestegoodwin.com

Where's The Ark?

We are on day 6 or 7 of rain here in South Louisiana.  Yesterday was probably one of the worse weather days I can ever remember in Baton Rouge.  A daytime high in the mid 40's with just nasty, drizzly rain with intermittent downpours.  The temperature swings are the worse.  Saturday and Sunday our high was in the mid to upper 70's. 

And I wonder why there is a cute little 8 year old snuggled in his flannel jammies next to me this morning as I work.  Conner could not escape the crud.  Thankful there is no fever.  Praying it stays that way.  Just feels achy all over and no energy.  Maybe after a day of rest it will be better tomorrow. 

Even with the gross weather and a sick little one I sit here this morning thankful beyond imagine for all of the great blessings I have.  We pray for everyone that is losing their homes and possessions to the flood waters that have once again plagued the residents of our area.  So many of them had just put the pieces together from Hurricane Isaac.  More and more roads continue to close as the swollen canals push water onto the roadways. Forecasters say we have at least one to two more days of the rains coming down.

From the great Robert Frost:

"In three words I can sum up everything I've learned about life: it goes on."

I know the sun will shine again and we will rejoice!

Monday, January 14, 2013

That Doesn't Happen to Kids

I have had more than a handful of people tell me over the past 5 years that kids can't have high blood pressure.  It is only for older adults.  Guess what....WRONG!  Children can and do have high blood pressure.  5 1/2 years ago I was one of those parents that didn't know this could be true.  How fooled we were.  It wasn't until Matthew (4 1/2 at the time) was diagnosed with severe hypertension due to renal artery stenosis. Want to know the scary part?  He had probably had high blood pressure most of his little life.  As a mom, I was so upset that I did not know this.  I had not been told.  Why didn't anyone ever say to me that kids need to have bp screenings starting at age 3.

For those that don't know what high blood pressure can do to a child here are just a few:
  • Stroke
  • Heart Attack
  • Vision Loss
  • Organ Failure
Hypertension does not come with a calendar to know that it doesn't need to strike until someone is over 50.  It can literally happen to anyone at any age.  This INCLUDES children.  Some could be as young as 2 or 3 years old.  And here is the kicker.......you DON'T HAVE TO BE OVERWEIGHT!

Matthew was just 4 1/2 years old and from every outward appearance was a child of great health.  He ate well, got regular exercise through play and activities, and smart beyond his years.  Then after a bout of recurring ear infections the decision was made to have tubes put in his ears and have his tonsils removed.  This proved to be the most life altering event for his little body. 

Fast forward nearly 6 years later and here is a breakdown of what undiagnosed hypertension meant for Matthew:

  • Emergent admission to the PICU where he fought for his life before a diagnosis could be made
  • Enduring the placement of an arterial line for continuous bp monitoring
  • Month long stay in the hospital in 2007
  • 3 different daily blood pressure medications to control his bp
  • Balloon angioplasty to attempt to open a 99% occlusion to his left renal artery in April 2007
  • Daily bp monitoring and strict sodium monitoring
  • Having an auto kidney transplant on December 23, 2008 in order to save his life and spending Christmas in the hospital
  • Developing hydronephrosis due to scar tissue from his transplant surgery
  • Having a stent that was too large placed to drain the urine causing massive bleeding and a blood clot to form requiring emergency surgery
  • Invasive re-implantation surgery October 5, 2009 to correct the hydronephrosis and re-implant his ureter to his bladder
  • Developing polyuria (overproduction of urine) and having his urinary tract not be able to keep up and requiring his bladder muscles to be retrained at 10 years old to void properly
  • Spending over half of his 10 years in and out of the hospital with numerous issues
  • Knowing that he will have a life long battle with renal issues and always watching over his shoulder for hypertension to rear it's ugly head again
For anyone this would be more than you would want to ever endure.  But for Matthew this has been his life.  Which means this has been our life.  This amazing child has handled it all with so much grace and dignity it would make any mother proud.  All he wants to do now is continue to fight and spread the message of routine bp screens and the NEED for every parent to  know that their child should have these lifesaving diagnostics.

As a mother, I want to scream at the top of a mountain how important this is.  We have learned so much and through tragedy comes triumph.  We are able to take such a dark time in our lives and use it for so much good.  Through the National Pediatric Blood Pressure Awareness Foundation we are able to save lives every single day.  What an amazing feeling to be able to give back. 

It is through everything that I have learned advocating for Matthew that I am now able to share this with the health care industry and help others.

To read Matthew's complete story and his amazing journey please visit www.bloodpressure4kids.org.  And remember KYKN...KNOW YOUR KID'S NUMBERS! 

Find me on Facebook at https://www.facebook.com/pages/edit/?id=110204345795440&sk=basic#!/pages/Healthcare-Mom-Kids-Can-Have-High-Blood-Pressure-Too/110204345795440

Matthew Update!

September 17th started the latest bout of hospitalizations, tests, and appointments to determine why Matthew was having severe pain and voiding issues.  To bring you up to date, initially a very small kidney stone was found on CT.  This was not the source of pain or issues because it was still located in the upper  pole of his right kidney. 

After months of tests it was finally determined that he has polyuria (over production of urine) and his little urinary system was having a hard time keeping up with the output.  He was told at first to drink ALOT to flush the stone but this has since been changed.  His nephrologist ordered another ultrasound to look at the structure of both the left and right kidney.  Even though the right kidney is his "good" kidney, there is still some scarring and blockages in it as well.  The good news is the ultrasound looked great!  Both kidneys are working beautifully and the retraining of his bladder muscles is paying off.  There was no residual urine that is hiccuping back into the kidneys.  The best news is the small kidney stone has disappeared.  So thankful it dissolved without any complications of him trying to pass it.

All in all, good news.  We continue regular follow ups with his nephrologist and urologist and pray that all stays stable for a very long time!  Now we are back to focusing on the important work of education and advocacy for blood pressure screens in children.  It could save the life of a child you love!

What does "Making A Change" mean?

What is the definition of making a change? I simply see it as believing something that can be made different with action.  Maybe not better, maybe not worse.  Different.  As I set out to change anything it is usualy with the intention of making it better.  Having just hit a milestone of turning 40 I have reflected alot the past few weeks on what I want to see changed.  There are a ton of insignificant things around me that can be better.  Covering up the grays in my hair, starting my running program again, getting back to a "normal" routine of sleep at night.  All of those things would make me happier and make life easier but when I think about what I really want changed I think in the large scope. 

I want to be a terrific mother and wife. My children deserve 100% of me and I want to give them that.  I want to become a more patient person.  Results are my drive and I like the word "INSTANT."  I think God has a way of teaching us the things we so desire in the most out of text ways.  Having never been a patient person in my 34th year God began the years long education in patience with me.  It was when I was 34 that Matthew first got sick.  It is amazing what traits you can find in the depths of your soul when you so need them.  For anyone that has endured medicine in any fashion, whether a patient or provider, you know that not very much is instant.  Lots of waiting.  During those times of waiting I feel like I became closer to God in my conversations.  Often times the only thing I could do was talk to God.  I don't know that I did a lot of talking.  I did more questioning.  I wanted some answers as to why this was happening. But this goes back to that lesson in patience he was trying to teach me.  Here I was still trying to get that instant answer so I could find a way to make it better, and God was still trying to teach me patience in waiting for the answers to come in the right time.
 
One day I finally put my hands up and said OK, you win!  I will wait to for the answers to come in the way you so desire and put it all in His hands from then on.  This was extremely hard for me to do being that I love to make sure I have control of a situation.  Not for a power trip but for the safest outcome for those that I love.  But at the ripe old age of 34 I finally understood the words give it all to God!  There are some things that I just don't think I can carry the burden of all by myself.  Not even with the help of my wonderful husband.  There are just some things that are bigger than us.
 
During the nearly 6 years that we have been on this journey of illness, hurt, and hope with Matthew I have learned so much.  I have learned to truly put meaning on the things that matter and what is important.  It is not the car we drive or the clothes we wear.  It is the deeper more significant things in this life that are important.   I hope and pray that my legacy in years to come is the children I am raising and the good I try to give back to the world.  I have so much to be thankful for and I hope to continue to repay this through the education and advocacy work I continue to do.
 
What is making a change to me?  It is seeing positive changes continue to come in health care for the well being of all pediatric patients.  Every child should have routine blood pressure screens beginning at age 3.  KYKN.....KNOW YOUR KID'S NUMBERS!   Do it for Matthew!