Saturday, March 29, 2008

Book Review

What on Earth Do You Do When Someone Dies? by Trevor Romain and published by Free Spirit Publishing is a book for children who are overwhelmed with loss. I found this book to be so honest and compassionate while dealing with these tough issues. I think this book could be read and understood by 6 to 12 year old kids yet appreciated by young teens and adults as well. The book devotes 2-4 pages of easy to read text to eighteen different questions that a child or teen might ask. What is so cool about this book is that it answers questions the child might be afraid to ask adults, for instance "What happens to the person's body?" Another good question in the text is "Is it still okay to have fun?"

Why do people have to die? This question is explained in simple terms and actually quotes a teen on the subject. Her take on it was simply that it is frightening because people don't talk about death. When something is not spoken of you naturally become more afraid of the subject.

This book describes all of the emotions involved in dealing with the death of a loved one and it does it with feeling and straightforward honesty. This book is a great resource for parents and would be helpful to read before the child experiences the death of a loved one first hand. If read before a loss, it could help a child develop coping skills. It also gives parents great ideas for topics of discussion. And anytime a book opens up lines of communication between a parent and a child it is always a good thing. Check this book out at your local library or pick up a copy at the bookstore. I know you won't be disappointed.

Friday, March 28, 2008

It's a Dog's life....or is it?

The life of a dog, or at least our dog, is really quite simple. He gets fed, he is hand bathed, he is exercised and then he sleeps. And he sleeps without worry. Adults usually don't get spoon fed, almost always have to bathe themselves, exercise from guilt under their own steam, and then we sleep. But we worry! Sometimes we even loose sleep from the worry. We complicate things in our lives when maybe they don't need to be so complicated. Then we worry some more. And what about the children? Children are so much wiser than us, because like the dog, they trust enough to not worry most of the time. And it seems, children that are ill have some inner peace and strength that the rest of us do not understand and they worry even less.

I shared in another post the young girl facing the loss of hair due to her chemotherapy. She has already decided not to worry but to get a cute wig. Yesterday, I sent a 15 year old boy suffering from Leukemia to surgery to get catheters placed for kidney dialysis. He is fighting a very aggressive cancer, has had a stem cell transplant and now he is in Kidney failure. His parents are a wreck. He is not. His comment on the way to the procedure was this. "If I don't come out of this, I want a shiny white casket and black satin on the inside. I mean it, don't try and fake me out with 100% cotton either, I want the satin. It will be more comfortable for the journey." And with that he waved as the doctor and tech pushed him into the operating room. He wasn't worried. He had a handle on life. He made the most of the moment. If that had been the last time he saw his parents, he would have seen them laughing. He brought joy to everyone around him at that moment, in the midst of our worry, and somehow it made us trust. Trust that no matter what happened, each of us who had seen that smile knew life would again be ok.

Think about it, maybe we should be more like our canine friends... worry alittle less, sleep alittle more, and love unconditionally.

Tuesday, March 25, 2008

The Bravery of The Child

I admitted a 16 year old patient last evening to our Pediatric Intensive Care. I speak of her because she was such a heroic brave polite example of what a teenager can be even though she was scared out of her wits. This young woman lives with her elderly grandmother who is her legal guardian. She spoke politely of her divorced parents, but explained that they were not emotionally mature enough to raise a child. WOW!

This patient was brought to the Emergency room for headaches four weeks ago and at that time it was felt she had the flu. Thankfully, her grandmother took her again to the Emergency room last evening because the headache had not subsided, and now the girl was experiencing double vision. Long story short, she has a mass in her brain. Again I say WOW. Now this 16 year old is told she has a brain tumor... could be cancer, might be benign, most likely is cancer... MRI in the am to see it more clearly... possible surgery, possible radiation, might need chemotherapy, could loose your hair..... all of this in a matter of a few hours. And although she had her grandmother and an auntie with her, she was the most mature adult in the room. And the best part is she wants to be a writer. Talk about an instant connection to her nurse alias wanna be writer me.

We sent the family home to get sleep and recoup for the tough day ahead. And then she asked me questions. All appropriate questions from a patient who was just told she may have cancer, but questions you expect from the parent at this point, not the child. And 16 years old is still a child. We talked about her school, she is a junior in ROTC. We talked about her grades, her interests, and her writing. And she asked about her hair.... Would she loose it? A really important question from a teenager. And when I told her she might depending on what they find and what they treat her with, her answer was...." Well, they have some really cute wigs. I will just have to get one."

Heroic, maybe not yet, but I can see it before this treatment is over. Brave, definitely, any teen that can maturely discuss their cancer and treatment and their future after only a few hours of information is BRAVE in my books. Polite, absolutely, I have not met a more gracious teen in quite some time. Will I follow her case? You bet. This young woman has much to give and I will follow her progress closely and pray daily for a positive recovery. But first, I bought her a pretty journal and a great pen. After all, she is a fellow writer wanna be and I think she will teach me a thing or two about living.

Sunday, March 23, 2008

Free Personalized Websites for Critical Kids

I have found another great site for parents similar to The Care Pages I have written about before. This site is It is also a free site for parents to build a web page for their child who is going through a health crisis. This site can be used by adults who are suffering a health crisis as well. The site has educational resources for parents to tap into. There is a newsroom area where the reader can find what is new in the medical field and there is a page for personal stories of healing and success.

This kind of free service is so valuable to parents of children that have frequent medical admissions. The web site is a great place for parents to keep loved ones informed and to stay connected to the outside world. It offers family and friends a way to contact and give support to the parents and child without the burden of phones interrupting at a bad time.

If you have a moment, go to and explore the site. There you will find a brief video tour of what Caring Bridge offers. You will see for yourself how much difference a site like this for parents and children can make in the healing process.

Thursday, March 20, 2008

Parents Beware....Child Abuse... a very real issue

I am here in the pediatric intensive care unit caring for a beautiful 5 year old diagnosed with a terminal cancer as her parents make every decision possible to prolong her life. Of course, I am not alone in this unit. In every other cubicle there is another nurse like myself caring just as deeply for another child. Some of those children are also terminal, while others have an acute illness or injury where recovery is expected. But in one of these rooms here tonight, there is an innocent infant who was born completely healthy. He didn't become acutely ill. He didn't get an unexpected terminal diagnosis. He wasn't in a car accident. He was shaken, squeezed, and thrown across the room as a result of an adult who lost their temper. And it makes me sad....

In our world filled with the newest technology and the best of the best in merchandise we can not seem to stop child abuse. Not only do we not stop it, we don't really address it frequently. Our media bombards us with visual stimulation daily about what we need to make us happy, or to make our lives better. But do we see many advertisements for helping parents cope when they are frustrated, angry, financially distraught, or overwhelmed being a parent? Do we look for programs in our areas where volunteers are welcome to teach parenting, or to mentor young mothers and fathers?

Here are a few things to keep in mind...

1. Adults get angry and frustrated... especially taking care of and being responsible for a child. But it is NEVER ok to take that anger out on the child. If you find yourself getting mad or out of control, leave the room, walk away, call someone, hit the wall if you have to. But don't hurt your child. And that means any child, any age. No excuses.

2. There are programs out there to help a parent learn parenting skills and coping skills. Call your local Social Service department at your local hospital. Call the non-emergency number of your police department. Call your local church. Call a friend. If you feel yourself getting overwhelmed, find someone to talk to and share your situation. Talk to your family doctor especially if you have had these feelings for sometime. Just call someone...

3. If you are a friend of someone who has anger issues, speak up for the safety of the child. Offer to go with them to speak to someone. Offer babysitting to give the parent a break. Offer to discuss options for whatever situation is causing the frustration. But offer something, it may be the only lifeline that adult receives.

4. Educate yourself as to what programs are available in your area. Volunteer if you can or consider making a monetary donation for the prevention of child abuse. If there are no programs in your area for parents, young or old, consider starting one. Visit local churches to see what programs they offer for parenting, preventing child abuse, and assisting teen moms.

As a society, we should be horrified that the abuse of a child occurs under any circumstances. If we can educate ourselves and others, perhaps one life can be spared. The subject is at least worth our thoughts.

Monday, March 17, 2008

Tips for Distracting an Infant or Child During Difficult Procedures

It is always a challenge to distract a pediatric patient during procedures, especially the painful ones. Parents can become so distraut over the process, that they are not always helpful and can actually be asked to leave the room. Here are a few ideas to keep parents calm, in control, and involved with the procedures that are done at the bedside.

1. Parents must be informed of the procedure, the steps involved, and what the staff expects if the situation is not emergent and non-lifethreatening.

2. Age appropriate distractions must be at the bedside prior to starting the proceedure. Age appropriate explainations of what is to come also needs to be done before the start to mentally prepare the child for the event.

3. Infants respond to sugar-water on a pacifier before the start of a proceedure and during so keep it handy.

4. Toddlers respond to a parent and a favorite toy. Keep in mind that no matter what, restraining a toddler for lab work, xrays, and other proceedures that require the toddler to stay still causes some level of distress. This is where parents need to understand that the need for the proceedure outweights the tears.

5. Older children will usually hold still if they understand what is happening, if they can see mom or dad, and if a reward is offered for the conclusion of the proceedure. Here just keep in mind don't promise something if you can't keep it. Don't promise a food item if the child is on a restricted diet for example.

6. Teens respond better if they have a choice in the matter, for instance which arm for the IV, or what time for the bath. Teens also respond to guided imagery during painful procedures where an adult helps the teen to imagine a happy or favorite place. The teen then can mentally stay in that place during the procedure and is somewhat distracted. More on guided imagery can be found on the Internet or from you health care provider.

Doctors and nurses are very tuned into pain control and sedation for procedures done in the hospital setting. Parents need to know they can discuss this issue and be advocates for their child's situation. Procedures should be as pain free as possible and pain should be addressed frequently from your health care providers.

7. Last, but not least, remember music when thinking about distracting a pediatric patient. Ipods, CD players, and portable DVD players all are a feasible distraction for children undergoing pokes and prods from well meaning hospital staff.

Sunday, March 16, 2008

Book review

Title: Sad Isn't Bad

A Good-Grief Guidebook for Kids Dealing With Loss

Written By: Michaelene Mundy

Illustrated by: R.W. Alley

ISBN 978-0-87029-321-4

This is a great book for the child experiencing his first loss from the death of a loved one. Adults deal with death from past experiences and have developed coping strategies that the younger child will not have. This book shows us how to help the child by giving them the "gift of good grief'"

The wisdom in these pages includes things like It is ok to cry and It is ok to ask questions. Each page addresses a different piece of wisdom showing the child healthy ways to express his or her grief. The colorful illustrations add to the text by demonstrating children going through these phases of grief. The book stresses to the grieving child that there will be loving adults there to care for them and that they are not alone.

I loved this book because it has a playful look appealing to children yet it addresses very serious feelings these children are experiencing. This book can be read aloud to the child one or two pages at a time allowing the child and adult to talk about the concepts. It is a great tool to open up discussions that are difficult at best. I give this book a thumbs up as a great reference to help kids going through such a painful loss.

Friday, March 14, 2008

Celebrate the little things......

No matter how serious the illness or accident, it is important for all family members to remember to celebrate the little things in life. You can get so caught up in the blood counts and lab results if your child has a childhood cancer or if your child has asthma, you look at every breath he or she takes and compare it to the last. When it is an accident, you can find yourself concentrating on the cause, the accident itself, or the bumps, bruises, and breaks that resulted. But you need to remind each other that this too will pass....there will be hills to climb and valleys to survive. So celebrate the 5 minutes of no pain, or the hour your child hasn't vomited. Look for the sunshine in every situation and it will help to ease your stress. I believe in gratitude, even in the worst of circumstances, even when you think there is nothing at all to be greatful for. Here is a spring board of things to be greatful for when your are so overwhelmed with your child's illness or injury or situation, you can't think straight.

1. family
2. friends
3. your favorite pet who loves unconditionally
4. a smile from a stranger
5. clean socks
6. clean underware...a must for comfort
7. a cold refreshing drink of water....some countries don't have that simple pleasure
8. chocolate... in almost any form
9. a car that starts
10. a roof over your head
11. a warm blanket or quilt especially if you don't have a roof over your head...some people are not so blessed.
12. a dime in your pocket
13. your health in whatever form it takes... there is always someone in worse shape
14. 5 special words when you hear them....thank you and I love you
15. your faith because it is what gets you through...
Start your own gratitude list daily and I know it will make you smile.

Wednesday, March 12, 2008

What can I do for the parents......?

Helping the parents of a chronically ill child can be a challenge. When a child is first diagnosed, help and good wishes abound. However, as the illness progresses to chronic or terminal, it seems well-wishers don't always know what to say or do. That translates into parents feeling alone. I have observed that most parents won't ask for what they really need, instead they say things like " We are doing OK" or " No, we really don' t need anything right now but thanks for offering."

Here are some ideas for what a family might really need but be to shy to ask:

1. Money.... hospital and doctor visits are not always close to home. The cost for gas, parking, vending machines, and cafeteria meals is not cheap. Extra change always comes in handy. A gift bag with a card and a roll of quarters is a great way to say you really care and is a small enough gift the recipient doesn't feel guilty accepting the token.

2. Prepared Meals... if the inpatient stay is long, a home cooked meal delivered to the hospital is a blessing after eating from machines and cafeterias. If the child is back home, a prepared meal or casserole once a week is a real treat for the parents who do child care 24/7 and don't want to or feel like cooking.

3. Sibling care... a day or week of babysitting, planning an activity for the other children at home, or carpooling the other kids to school activities can help normalize the life for the healthy kids. It can also relieve grandparents who might need to visit the hospital or are not physically able to care for the kids full time. Give parents exact times and dates you are available rather than an open invitation to call if needed.

4. Clean... cleaning and household chores get put on hold when a child is seriously ill. They are also not the things you ask others to do for you, however to come home to a clean house is a real treat. Also, laundry, mowing, shoveling, windows, or any seasonal job that the parents haven't had time to do would be appreciated. When my brother-in-law was hospitalized unexpectedly for a few weeks, our family finished roofing his house, a project he started before he got sick. Use your imagination and look around to find those chores that need doing. What you do will be appreciated beyond words, I promise.

This is not a complete list but will spark other ideas for you to consider. Think about what you would want from others if you were in their situation and go from there. Blessing others is always a good thing. I challenge you to be a blessing today!

Sunday, March 9, 2008

tips for parents dealing with the siblings of an ill child

Here are a few quick tips for reaching out to siblings when their brother or sister becomes terminally ill.

1. Be honest keeping in mind the age of the healthy child seeking the information. For a very young child, simple yet honest answers will do. Older children need more concrete answers as well as an honest approach. . Although some children will ask more than a parent may be ready to explain, keep in mind that the older the child the more experienced they are at gaining outside information. Their peers, the Internet, books, and other well meaning friends will be a source of easy but not always true information. It is important that they can trust that you are giving the facts.

2. Include the siblings when a change in status occurs. Again, remember age appropriate inclusion. It may not be appropriate for young children to visit an intensive care for instance, or to be told of every test being done. Yet older children may need to come visit to see for themselves just what is going on. They will welcome being included when their brother or sister is undergoing something painful or scary. Keep in mind it is also not appropriate for a sibling to hear scary news from outside sources regarding their sibling. It comes better from a parent.

3. Avoid Promises that you may not be able to keep. If you promise a cure and the sibling gets sicker, you have broken a trust and it maybe difficult to regain. Instead, offer hope at a cure for example, but be honest about other possibilities that you cannot control.

4. Keep true to your family values. Include your religious and spiritual practices throughout the illness and treatment. This teaches the other children the importance of your family values. It gives them something to believe in when you are not there. If you pray daily, encourage the siblings at home to pray together even if you are not available.

5. Plan special time alone with each of the other healthy children. Sometimes it's almost impossible to carve out time for the children at home when you have one ill in the hospital. Fifteen minutes in the hospital cafeteria may be the extent of the time you can find, but I encourage you to make the effort. The healthy children at home need to feel that they are thought of, missed and loved. And I know from experience, you as the parent of a sick child, need a break. A simple good morning or bedtime phone call adds to the feeling of belonging and being important. These short visits and conversations keep you all connected and refreshed.

These,by far, are not the only things you can do to help your children deal with the terminal illness of their sibling. I will address other activities you can explore at a later time. You can also reach out to your pastor, the hospital chaplain, or the hospital social worker for more resources. Remember, whatever you are dealing with, your children at home are also dealing with. Stay connected.

Friday, March 7, 2008

book review

Title: Help Me Say Goodbye
Written by: Janis Silverman
A workbook for families with young children dealing with death.
Publisher: Fairview Press
ISBN: 978-1-57749-085-2
Publication: 1999

I have found another great workbook for parents to use with young children dealing with the death of a loved one. Janis Silverman is teacher and uses that to relate with children effectively. Throughout the entire book there are pages for writing, drawing, and topics to discuss. For parents who find it difficult to find the right words, this book will give you tips on how to say it. One example from the book discusses the fact that not everyone gets better and how important it is to say goodbye before the person dies. " What can you do to show how much he or she means to you? Draw or write your ideas." is one example of how the author draws the reader actively into facing the truth. The book also discusses all the feelings a child might experience while grieving. Guilt, being sad, anger, and fear are normal feelings for a grieving child. This workbook allows the reader to work through those feelings with art and writing.
The black and white pages allow for the child to add color and imagination when drawing as well as encourages the child to openly discuss their feelings with an adult.

This book is available from your local bookstore or library. It is well worth checking this out.

Wednesday, March 5, 2008

The wings of an angel

In 2005 my father in law was in hospice and semi-conscious. Hours before he passed away he aroused long enough to tell my mother in law that he had the wing of an angel in the palm of his hand.

Last night, I cared for a 12 year old boy in his last hours. He aroused hours before he quietly passed and told his mother and grandmother goodbye. He whispered, " I didn't want to come back but they said I had to, that I need to tell you how beautiful it is.. all white and gold. It is so beautiful and I was so happy there. The angels were around me . They wanted me to tell you that I will be alright and for you not to worry about me." Those were his last words and they were a great comfort to his mother.

I share this with you , so that today you take a few minutes from your busy schedule to reclaim your beliefs and get your heart in order. Life is precious and can be taken when we least expect it. For me, my heart believes in a loving Christ, a life everlasting and the hope of beautiful heavens with some of those angels I've heard about. Christ is my foundation, and though I sometimes lose my focus, reclaiming my beliefs keeps me grounded when life throws me a whammy. This helps me be a better wife, mother, nurse, and hopefully a better writer too. Whatever you believe, is your heart in order? Do your core values provide the foundation you need when life throws you a whammy, just in case there is an angel watching? Just in case..........

Monday, March 3, 2008

Lazy Monday!

Our dog Buster...on Monday mornings

Just so the reader doesn't get an inflated impression of what it is to be a critical care nurse, I thought I would share my Monday morning... Keep in mind that I worked 12 hour nights over the weekend. I also had 5 different patients over the course of two nights and 4 of those have a terminal diagnosis. Because I am me, I become personally involved with their dying process while I am their caregiver. Which explains why on Monday morning I had barbecue potato chips and not one but two diet Pepsi's for breakfast. It also explains why I still have on pj pants and an unmatched tee shirt in the middle of the day. I can only explain my hair as a cross between Bozo the clown and something you see on a cartoon of Tom and Jerry when the cat is being electrocuted. You get the idea. And I want to be a writer. Go figure. But then I look around at my real life and I am greatful. I thank God I can help those who are so ill. I thank God my children and grandchildren are healthy so far. And I thank God He has placed me in my current nursing position with children who need me.
Now, I will drag my mismatched self away from the computer to do the activities of daily living that show my husband he is loved, like laundry, dusting, making dinner... all the things he will notice. These things are important because they remind me that along with dying, there is still living. Have a great week and enjoy your life, whatever life brings.