Rainy days,


Source: Rainy days,

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Rainy days,


When it rains, it brings back so many happy memories

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“I always like walking in the rain, so no one can see me crying.”
― Charles Chaplin

Rain has so many different emotions for me.  The one that I feel when it rains is happy.  I know many people would say “really”, but yes it is true.

The quote above says, no one can see you cry.  Happy tears.

Since living in the hospital with Lauren, every time she was allowed to go outside for a bit, (it didn’t happen a lot), but when the doctors would give her permission it was raining.  We didn’t care, Lauren needed to go outside just for her sanity.  I can still picture in my mind, the first time.  Lauren, her nurse and myself wheeling her outside, we were under a covering from the hospital.  Lauren told us to wheel her into the rain.  The moment the rain hit her, she just put her head upward and said  “this is the best feeling in the world”.  I stood there and watched her.  Tears were rolling down my face, just watching how happy she was.  She just sat in her wheelchair, with a big smile on her face feeling the rain as if it was the best thing in the world.  And it was.  Lauren watched cars driving by, people running to get out of the rain and she was in heaven.

It reminded me how we take so much for granted, just the little things like rain.  After that day, when it would rain and I would go outside, I would look at the rain with a different outlook.

Every now and then, a rainy day is a welcome.  We need it to water our yards and gardens.  I look at it as a cleansing of the air also.

Next time it rains, take a moment to think about people who would love to feel the rain.  To you it may be an inconvenience, but to many, it would be a dream come true to feel it.

Lynne 1437940979_love_valentines_day_11

football season is here…..


My fun post.  Football season is here..  

                      My buddy Joe and I wearing our new customized Patriot’s jerseys.  We are Patriots fan’s so we thought we would join the team with our last names on them.  The numbers are special to us, they are not player’s numbers, they are our own.

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Football season to me means, good friends getting together and just letting loose for a couple of hours.  Hooting and hollering.  Sometimes you just need to get it out of your system.  It’s my release.

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Let’s have a fun and exciting season.

Now a dedication for my husband, Dean.  Oakland Raider’s fan for life.

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He will support my team when they play, so I support his team when they play.

DSCN2860yes that is me, we went to a Raider’s game in New Jersey, I hate to say this, but had a great time hanging out in the black hole. Raider fans know how to tailgate. OMG

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Seats were amazing, 5 rows up.  They were playing the Jet’s.  Not a Jet’s fan at all. So after a couple of beers, I had a great time.

LET MAKE SURE WE ALL HAVE A SAFE AND EXCITING FOOTBALL SEASON.

Leave a comment, just wondering who your favorite team is???

Parent’s experience PTSD: Post Traumatic Stress Disorder


I came across this article written by Barb Roessner.  For awhile I was starting to think I was just crazy or weak.  PTSD : post traumatic stress disorder is real.

Living in the hospital with my daughter for close to almost a year and a half, was very hard.  Always wondering and worrying with fear, no privacy and being closed in.  All my freedom was taken away. After writing that sentence, all I feel is guilt.  Oh my Lord, how my daughter must have felt.  As a parent, I had to be the strong one for Lauren.  I had to keep a smile on my face with tears from inside.  When she was feeling down, I would do something crazy, like just break out in a dance just to try to make her laugh.  She would say to me “your nuts mom”.  Now when I think of it, I guess I was nuts.  I was trying to cope with our situation also.

This picture was taken when we were watching a patriot’s football game.  I was rubbing Lauren’s feet to make her more comfortable, and I was wearing my Patriot’s hat.

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Living Life

PTSD is so real.  There is not, one day that I do not have a flash back or memory though about what has happened.  Some people say to me, you need to move forward.  I am, but the memories do not go away.  I guess I’m always afraid of going back.

To this day I still have a hard time going to a store, I can only stay in there for a short period of time, then I start to have anxiety, I do not like to be in close places anymore.  Also, I have a hard time leaving my house.  My house is my security.  When I am home all is well.  I know with time, it will get better but that saying “NO PLACE LIKE HOME” is so true.

Can Parents Experience PTSD from Their Child’s Heart Condition?
Written by: Barb Roessner

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When most people think of post-traumatic stress disorder (PTSD), they imagine military veterans returning home from combat. Soldiers have been so exposed to human tragedy, their minds become conditioned to fight or flee, and surprising things—a firework exploding, someone dropping a book on the bus—could transport them back to the battlefield without warning.

People with PTSD may have trouble sleeping and struggle with constant anxiety. They feel like they’re on alert every second and struggle with memories of the traumatic events that are vivid enough to feel as if they’re happening to them again, according to the U.S. Department of Veterans Affairs.

But PTSD doesn’t just affect veterans. It can develop in individuals who have experienced any type of trauma—including parents who are watching their children struggle with a serious heart condition.

No, they are not in the midst of violence. And no, they are not bearing the medical burden of the heart condition. But the parents feel the agony of their child’s illness as if they are going through it themselves. They may always fear a meeting with a doctor, having heard the worst there before. Or they might forever associate their child crying in the night with a moment when the disease was especially trying.

Honestly, I think all families of kids with heart conditions have PTSD to varying degrees.

Think about it: the official definition of PTSD from the American Psychiatric Association doesn’t only include those who experience the trauma, but also those who witness it.

For families whose children have serious heart conditions, the parents’ stress level is high and rising all the time. We have cared for some families in which one or both of the parents sought treatment for PTSD. This usually happens during the waiting period: that time between being placed on the heart transplant list and actually getting a heart.

During that period, parents are on edge. They are constantly wondering when or if their child will receive a new heart in time. Then, they are faced with close calls that trigger their stress level to spike even higher, including:

Stroke
Kids with complex congenital heart conditions are at a higher risk of stroke. And not just 1 stroke, but they are at higher risk for recurrent strokes, according to a July 2012 study in the journal Annals of Neurology. Because their hearts are not functioning at their best, blockages can sometimes prevent blood from being pumped to the brain. Just like when anyone else has a stroke, this could cause serious disability or be life-threatening.

Cardiac arrest
Sudden cardiac arrest is a technical way of saying that the heart stops functioning. Congenital heart diseases—namely cardiomyopathy—are among the top reasons why children go into sudden cardiac arrest, according to a March 2012 study in the journal Pediatrics.

Extended waiting
Children listed for a heart transplant are more likely to pass away waiting than people waiting for any other type of solid organ transplant, according to a February 2009 study in the journal Circulation. As time goes by, the wait wears on parents, and it doesn’t get easier. That could be because one of the key risk factors for PTSD is feeling powerless, according to the U.S. Department of Veterans Affairs.

Then, there’s all the other complications that can happen. Some children have to have limbs amputated because of poor blood circulation. Some parents have literally watched their children stop breathing, turn blue and then had to entrust them to doctors and machines on faith that they’ll see them alive again.

For parents in any of these situations, when it’s a child—your child—you might as well be in the throes of a violent assault. The stress response is about the same.

I’ve only mentioned the medical complications. Let’s not forget about the strain on marriages, the financial burden that leads some families to bankruptcy and the issues that can arise with other children.

Why Addressing PTSD is So Important
The long-term issues of unchecked PTSD are serious, mainly because a prolonged fight or flight response is so taxing on the body.

Think about it: Your body is gearing up to protect itself from what it perceives to be an attack. The heart rate spikes to get more blood to your muscles, according to the National Alliance on Mental Illness.

Breathing speeds up, sometimes to the point of hyperventilating. Blood sugar spikes. If the body experiences this stress response too much, it could develop into long-term problems with high blood pressure.

This article is so true.

If you know someone who is in this situation please pass this on.  They are not alone.

Lynne 1437940979_love_valentines_day_11

Every 10 minutes, a person is added onto the transplant list.


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Statistics
Although there have been advances in medical technology and donation, the demand for organ, eye and tissue donation still vastly exceeds the number of donors. For more information, read the summary below or create a detailed data report on the UNOS Web site.

More than 123,000 men, women and children currently need lifesaving organ transplants.Every 10 minutes another name is added to the national organ transplant waiting list.

  • Sadly, an average of 21 people die each day because the organs they need are not donated in time.In 2014, more than 8,500 deceased donors made possible approximately 24,000 organ transplants. In addition, there were nearly 6,000 transplants from living donors.
  • Nearly 48,000 sight-restoring corneal transplants were performed in the U.S. in 2014.
  • Each year, approximately 30,000 tissue donors save and heal lives.
  • More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
  • According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.
  • 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

Just a few fact’s that I think needed to be said again.

Lynne 1437940979_love_valentines_day_11

Nurse’s- God’s Gift for Patients


When I watched Miss Colorado, the words she spoke were so true.  Sometimes you get that special patient that will remind you of why you became a nurse.

TO ALL NURSES OUT THEIR, YOU ARE NOT JUST A NURSE, PERIOD

During our experience, our family has seen so much from living in a hospital for a lengthy period of time.  Lauren’s nurse’s became family to us.  Not only did they comfort her, but us as well.   They are the one’s that are with their patient’s all day and night long.  I have the utmost respect for Lauren’s Dr.’s, but it was Lauren’s nurses that had been responsible for her care.  We were blessed to have wonderful nurse’s at Brigham and Women’s Hospital in Boston Ma.  There was many times, Lauren’s nurse’s would question what a Dr. ordered for Lauren, and come to find out they were correct.

I remember one time in particular, it was after Lauren heart transplant.  One of Lauren’s nurse’s came in just to say hello.  That day she was not Lauren’s nurse, but just stopping in to see how we were doing.  One of Lauren’s Dr.’s came in and wanted to do a procedure, he needed my consent to perform it.  I just sat there, really didn’t understand what he was talking about.  Brenda came over, I looked at her, the Dr. explained again what they wanted to do.  Brenda sat with me and told me if it was her child she would have the procedure done.  Explained the benefits, in a way that I could understand.  I trusted her so much, that she helped me make the decision to go ahead with the procedure.

I am PROUD to post this video on my site

Now, I must respond to the comment made on the View.  WHY IS SHE WEARING A DOCTOR’S STETHOSCOPE?  It is NOT a Doctor’s stethoscope, it is a medical stethoscope.  Nurse’s MUST wear them at all times.  They are the one’s that are with their patients.  During our time in the hospital, I could not tell you how many times during their shifts, they check heart rate and  breathing. I cannot believe my ears, when an educated TV personality would say such a childish comment, about Miss Colorado.  Hell, I have my own.  When we came home, I was trained to take Lauren’s blood pressure daily.  I had to log her heart rate, and blood pressure daily at the beginning.

TO ALL NURSE’S OUT THERE, YOU ARE ANGLES SENT TO US FROM GOD

Lynne 1437940979_love_valentines_day_11

Reflections


This is a follow-up post from yesterday’s post.

September 16, 2015 Lauren spoke at the Chicopee Chamber of Commerce Breakfast as a guest speaker for Donate Life. It was a packed house. We were both nervous.  Before Lauren became very sick, I had a business called Country Look Designs Gift Baskets.  When I had my business, I was a member of this Chamber,  it was a great way to meet other business people in the area.  I did see some familiar faces,which was very nice.

When Lauren was giving her speech, she mention that she had a PA line in her neck (we called it her leash).  This is Lauren with her PA Line in, before transplant .

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This is a post Lauren wrote while waiting for her heart:

 I need to have a “PA line” in my neck with two special medicines helping my heart beat stronger to be considered a 1A top of the list. Well I ended up getting the line in on that Friday and things were looking great until about 10:30 at night. My mom was rubbing my feet trying to relax me so I could fall asleep, then all of a sudden my heart rate started going up. Long story short, the ordeal went on until almost two in the morning. My room was filled with doctors and nurses from the ICU, which one of the doctors tried to jiggle the line. Once he had done that, all hell broke loose. I think there was a kink or something because after that a ton of the medicine released and my heart rate went up to 158. I had the x-ray machine in my room, ekgs done, the whole nine yards. My mom was crying because you could literally see my heart beating through my 101 lb body. All of a sudden my nurse told me they were ready to sedate me… and put the shock stickers on me.. yup, they were ready to jolt my ass! Scary! Instead they ended up pulling the line and for the rest of the weekend I was bumped down to a 1B statis. It was a stressful weekend because we were unsure if I was going to be able to get the “LEASH” back in my neck. I call it a leash as a joke because I only have about a 3 foot radius to walk around with it in… Just imagine being 22 and basically being bed bound for 10 days at a time while all your friends are progressing and having fun with there lives, actually imagine being any age and told you had to deal with this.

This picture was taken a couple of months after transplant.

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My daughter Lauren endured every complication that could happen during her recovery.  It was a long road for her, but for the most part she had that pretty smile on her face.  She didn’t want to show me her fear, nor did I. Together we stayed strong, because we were going home someday.

This was the day we left the hospital, after 5 months of recovery.  She never gave up, she still had the trac in and also her feeding tube. But we are going HOME !!!!!!!

When we walked through these doors in March of 2013, never thought we would be walking out May 2014.It was a long road, but I told my daughter we would be walking out together, with what we came for.  Thank you GOD…

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Lauren & Lynne 1437940979_love_valentines_day_11

You can only donate your organs if:


You can only donate your organs if:
you express a wish to donate your organs while you are alive, or the person closest to you (next of kin) gives their permissions.

Your organs cannot be removed if you or your next of kin have not given permission.
Organ donations come from people whose death has been confirmed while on a ventilator in a hospital intensive care unit (donation after brain stem death) or from people whose heart has stopped beating (donation after circulatory death). In some cases, people can donate their organs if they die in a hospital emergency department or are pronounced dead on arrival at a hospital.

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Organs can only be removed from someone with consent. You can give consent by indicating that you want to be an organ donor if you die. The best way to do this is by joining the Organ Donor Register, as this makes it easier for medical staff to establish your wishes.
If it isn’t known whether you wanted to donate your organs in the event of your death, the person closest to you will be asked what they think you would have wanted and they can give consent to donation. That is why it is vital to let your family and friends know that you want to be an organ donor.
What is organ donation?

Organ donation is giving an organ to help someone who needs a transplant.  The major organs that can be donated include the:
heart
liver
lungs
kidneys
pancreas, eyes and skin.
Organ donation saves thousands of lives, and can also improve the quality of life for many others. Between April 1 2013 and March 31 2014, 3,569 people had their sight restored by donated corneas.

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Becoming an organ donor

The Organ Donor Register is a confidential database that contains the names and wishes of people who want to be organ donors. It helps doctors to understand and carry out your wishes.
If you want to be an organ donor, as well as joining the register, it’s important to tell your family so that they are prepared in case anything happens to you. Organ donation will be far easier and comforting for your family to accept if you have already discussed your wishes with them.
Many people gain a great deal of comfort from knowing that the death of a loved one has helped to save the life of another person.
Join the Organ Donor Register

http://www.donatelife.org

You can also sign up to the  Organ Donor Register when you
fill out a driver’s licence application form online.

Please take a moment to think about this subject.

Lynne 1437940979_love_valentines_day_11