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.
Wednesday, January 16, 2013
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
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!
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:
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:
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
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
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
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!
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!
Wednesday, November 7, 2012
Why Is It So Important?
On occasion I have posed the question to myself, "Why is blood pressure awareness for kids so important?" As always, I remind myself of the answer. Because it can save the life of a child! If someone would have told me 5 1/2 years ago that all children need blood pressure screens I would have been the first parent at the pediatrician's office asking for it. Instead I watched my little boy take on the biggest battle of his little life. It has been a most challenging few years with alot of education and understanding. There still, however, seems to be so much more that needs to be done. The overwhelming feeling of needing to protect other mommies from the pain and worried I endured drives me each and every day to spread this message.
The NPBPAF (www.bloodpressure4kids.org) has made some of the most amazing strides since our inception in 2010. We have provided free blood pressure screenings to over 1,700 children. The education and awareness that has been given to parents and other community members numbers in the 1,000's. The positive outcomes we are seeing from healthcare providers in the way they approach annual screenings has been tremendous. More and more physicians are incorporating routine bp screens for all of their pediatric patients.
Today is a new day. Today marks another change in history. Regardless of whether your candidates were winners or losers I send a personal challenge to each and every parent. Ask yourself this simple question......Do I know my kids numbers? If you don't make it a point to learn them. It could save the life of a child.
The motto of the NPBPAF has always been this, KYKN......KNOW YOUR KID'S NUMBERS!
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