Meaning of New Heart=New Beginnings

February 17, 2016 Lynne1324Leave a comment

New Heart = New Beginnings

I started this site after Lauren had her heart transplant and we were home. I thought the title was appropriate. New Heart is self explanatory, but New Beginnings takes on it’s own meaning. I never knew what life had in store for us. All I knew was we had a new beginning in life.

It has been a little over two years since Lauren received her new heart. Medically Lauren is doing fantastic. We have had a couple of bumps in the road, but Lauren being Lauren, she has tackled the obstacles and is moving forward in life. I am so proud of the strength she has and is an inspiration to me and anyone she comes in contact with. Lauren is now very active in the American Heart Go Red For Women Association and also Donate Life Organization. Going out with friends, going to the gym, just living life.

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In my next post I have some very exciting news about what Lauren has been up to …….

In the past two years, New Beginnings has had it’s ups and downs. When Lauren was in the hospital, as a parent you experienced and have seen things a parent should never have to go through, but when you don’t have a choice, you just do what you need to do.

For the past couple of years, this is what I would see in my mind:

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I was always afraid something would happen and we would end up back in the hospital. Always afraid the heart would reject, then having to start the process all over again. Hearing the sounds of the machines, nurses in the room all the time, sleeping on whatever is available. A part of me always lived in fear, for my daughter and myself. Not to mention, my husband who would travel every weekend to be with us.

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At the beginning, those feeling are so understandable. When a parent see’s their child in this condition, words cannot describe an emotion you feel. You just pray that this nightmare will be over soon and the two of you will be walking out the hospital doors soon.

Well, it’s been two years now and I can honestly say this vision is finally fading away. Yes it took little over two years for me to believe that, that is our past.

I am writing this to release feeling that I have been harboring within me. You can say this is my release of memories that have given me nightmare, anxiety and the past. I need to put the past in the past and life for the future.

To all my friends that I have pushed aside, I am sorry. My breaking point was when Dean, Lauren and I took a trip to Florida for my sister’s birthday. My mother was there and I can say we got into a conversation about Lauren and how I have been feeling and acting. She told me I probably need counseling, to help me. I got upset and said I didn’t. Well, after that conversation, I did a lot of soul searching and my mother was right. I didn’t get counseling, I thought long and hard about how I have been acting. I had to realize Lauren was OK. She wasn’t going to be rushed to the hospital. Lauren is 25 years old and she doesn’t need her mother worrying all the time about her. Lauren needs to be 25.

Since realizing Lauren is OK, I have been able to think about my life. I need to reconnect to friends I haven spoken with in quite a while. Need to focus on my husband more. Lauren is 25, so my husband and I can start doing more things together as a couple.

With this say, Lynne is moving forward, thanks mom for opening my eyes

Surgery again in our household, Lynne’s story

January 26, 2016January 26, 2016 Lynne13243 Comments

Yes, I’m having surgery tomorrow morning. January has been a hell of a month for us. I’ve taken take of my daughter now it’s my turn to take care of myself.

About 8 weeks ago, I started to experience pain in my back that traveled down into my right leg. Didn’t think much of it, until it started to get worse with no relief. I finally had to call my Dr. A couple of years ago, I was experiencing lower back pain. I was diagnosed with Degenerative Disc Disease‎. I did physical therapy and it went away. But now it is back.

First they tried me with 800mg of ibuprofen. The pain just kept getting worse. Then they gave me prednisone which is a steroid for 5 days. Nothing. After that I received muscle relaxers to help. This was around Christmas time now. I can honestly say, it ruined my Christmas. I had a couple of mimosa’s in the morning trying to enjoy my Christmas morning with my family, but it is true you cannot mix booze with muscle relaxers. Let’s just say, I worked so hard to have a beautiful Christmas for my family and it did not turn out that way.

Went back to my Dr. and now they had me go for an MRI. At this point the pain was just ongoing. Every moment of the day, it has been getting stronger and stronger. I cannot sleep, and if I do I end up waking up around 2-3 in the morning with pain that I have to stay up. Laying down makes it throb more. When I had the MRI done, it was so painful. I could not lay still, my back and leg kept going into spasms. I had to just bite down on my lip and keep telling myself you can do this. The whole time I was having this done, I kept thinking about my daughter and all the procedures she had to endure. If she could go through the hell she went through, then I could do this.

Results from the MRI came in. I was on the phone with my Dr. and she said “normally I would have you come into my office to talk, there seems to be a mass on your spine”. I really wasn’t sure I heard her correctly so I said to her, “are you saying that I might have the C word. (I couldn’t say the word). She wanted me to see an Neural Surgeon. I just sat there and cried, I felt like my whole world just ended. About an hour after I got off the phone with my Dr., my phone rang and it was the surgeons office calling. They wanted me to come in that day. Now I was really scared. Called my husband and he was home before I could get myself together enough to be able to talk. We went to the office and to our relief, it is not a mass. I have 2 herniated disks that is hitting my sciatic nerve and the image she saw was my bone protruding out a bit. We scheduled the surgery but it was going to be 3 weeks away. So for the last 3 weeks I have been living with a pain I wouldn’t wish on anyone. They have me on percocets to help with the pain, but it is really not touching it. This is how bad the pain is…Dean and I were invited to go to the Patriots playoff game. Great seats so there wouldn’t be that much walking. At first I said no, I was afraid I wouldn’t be able to walk it, but then said the hell with it, I can do this. Well, I only lasted till half time. Thank God we had a hotel room close to the stadium.

So tomorrow hopefully I will be able to get rid of the pain I have been living with. When we went to the hospital with Lauren I actually had to use a wheelchair, I could walk the hospital. I am very nervous about having back surgery, but I have no choice at this point. I guess it’s Lauren time to step up and take care of her mom for a bit.

So to all my friends out there, if you haven’t heard from me in awhile, this is the reason why. Just staying in and trying to find positions that try to make me comfortable.

Wish me luck

Lauren told me, “you got this mom”.

Love Lynne 1437940979_love_valentines_day_11

Sum up Lauren’s last surgery

January 26, 2016 Lynne1324Leave a comment

2 years after my daughter Lauren had heart transplant, in January Lauren had her yearly biopsy. The biopsy came back no rejection, but they found she had an arteriovenous (AV) fistula which is an abnormal connection between an artery and a vein. Normally, blood flows from your arteries to your capillaries to your veins. After meeting with a Vascular surgeon, they scheduled surgery to correct the fistula. Since Lauren’s transplant her blood flows have always been high, but the Dr.’s didn’t seem to concerned to much about it. The main concern was the body wasn’t rejecting the heart. The surgery was scheduled a couple a weeks ago at Brigham and Women’s Hospital in Boston Ma. We were told the surgery would be around 2 hours and they were going to admit Lauren in the hospital over night just for observation.

My husband Dean and I were nervous about Lauren having to go through another surgery after everything she has been through, in the back of our minds we knew there are always chances of complications with any surgery. Not to mention how Lauren felt about another surgery. The three of us talked and agreed it was going to be a quick surgery, and also Lauren wanted to be able to see some of the wonderful people that helped her get through her life changing experience again.

Every time I go back to Brigham’s I have anxiety, to many memories of when we were living there. My husband has a wonderful way of keeping me and Lauren calm to get through it. We are two lucky women to have him in our lives.

We arrived at the hospital 6:00 a.m., Lauren’s surgery was scheduled for 8:oo a.m. When they took Lauren in, they told my husband they would be in contact with him with updates while we sat in the family room waiting. After a couple of hours they called and said she was doing good, relief was all we felt. You see, every time she has had surgery there was always complications so in our minds it was always there. Well, this time was different. To sum it up, Lauren’s surgery ended up taking 6 hours, not 2. The original ultrasound showed one fistula, but they found 3. They were able to fix 2 of them only, Lauren was in surgery to long and they didn’t want to keep her under any longer for safety reasons. We were shocked to find out she 3. The surgeon told us her blood pressures did improve enormously. With all the procedures she had in the past couple of years, we were told they were really not that surprised, but it was something they didn’t expect to have to do. By 6:00p.m. we were able to see Lauren in the recovery room. We were then told, her room wasn’t ready yet, it would be another couple of hours. All we kept thinking was, OK it’s over and our daughter is going to be alright. Big relief.

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So back to waiting. Give my husband the remote and he’s a happy man.

Lauren was suppose to stay in the Shapiro Building, but they didn’t have any rooms so they moved to the Towers Building. I kept thinking Lauren was going to be upset, we never stayed there and she wouldn’t be able to see any familiar faces. Come to find out it didn’t matter. Lauren was so sick during the night, throwing up from all the meds she was given. The room we stayed in was in the Pavilion Suites. They really upgraded her. This floor is for celebrities or you have to pay big time to be able to stay there. Talk about a hospital room. Imagine this, hardwood floors, cherry trim all around. The menu could have been from a 5 star restaurant. She deserved it. But she didn’t know where she was until the next morning when she woke up.

This is how they served the meals, room service style. Lauren’s breakfast.

That morning we told Lauren about what happened during her surgery. She was shocked to find out she was in surgery for 6 hours and she had 3 fistula’s instead of one. Lauren did have quite a few visitors from the Shapiro Building that took care of her. They found out where she was and everyone kept saying “wow, how did you get this floor”. It made her feel very special and she was able to visit with old friends.

It was a long trip for my husband and I, but the end result was Lauren was doing great now. Sore but good. They took great care of her and we were told they are not concerned at this time about the last fistula they could not repair. Maybe down the road, but not at this point.

It has been two weeks since her surgery, last Friday the three of us got back in the car and had our appointment with Lauren’s surgeon for a follow-up. All is good. Lauren is still sore, but we were told it is normal healing.

Thank you Brigham and Women’s Hospital for taking great care of our daughter again.

With much love

Lynne, Dean & Lauren 1437940979_love_valentines_day_11

Giving Thanks

November 24, 2015 Lynne1324Leave a comment

On this post I would like to give thanks for being home with my family. Something that so many people take for granted. The little things in life.

Waking up in your own bed.
Sitting in your pajamas and having that first cup of coffee.
If you are hungry, going into the kitchen to make something to eat.
Take a shower then be able to pick out whatever you would like to wear for the day.

These are just a couple of examples of things that I will never take for granted again in my life.

When I was living in the hospital with my daughter Lauren, I could not do that. When I would wake up in the morning (from a disturbed sleep from all the nurses and Dr.’s coming in and out all night), from my couch that was my bed, I had to go into my suitcase and pick out what outfit to wear. Slim pickings, so many days I would have to wear the same cloths. Depending on what was going on for that day, a shower would be in question. So a lot of the times it meant a sponge bath to make myself feel human and presentable. Then it was “I need a coffee”. Get money. Walk down to the cafeteria, make my coffee wait in a long line to pay, now I can sit with all the hassle and bustle of all the hospital employees going on about their day ahead. So relaxing, NOT. Living in a hospital is very expensive, so I would pass on breakfast and wait until around 2p.m. to eat. Most of the time I would snack on crackers, that was on the hospital floor. To be able to have a meal, it meant going back to the cafeteria, walk around to see what they were serving. Most of the time I would opt for a salad, it was a make your own. When you got and pay they would weigh it, so I would get a salad and a drink we are looking at about $10.00.

Theses memories are so real. I will never forget that way of life. This went on for almost a year and a half. As I am writing this, so so many people are living that life right now. Family members that are living in the hospital with their loved ones. Someone is waking up, packing up their bedding and probably saying to themselves,” I can’t do this another day”. Then you look at your loved one laying in the hospital bed, hooked up to machines and you say to yourself “Yes I can”.

To everyone living in a hospital, you are not alone. I feel your pain, your frustration. I was blessed and I am home now with my daughter. My prayers are going out to you for the strength you need to go one more day. One day at a time.

If you need to vent to talk, please contact me. I can relate to your situation.

lrobitaillecld@aol.com

Lynne 1437940979_love_valentines_day_11

Lauren has Pneumonia, no hospital stay

November 19, 2015November 19, 2015 Lynne13243 Comments

The last couple of weeks, Lauren has had a cough that was not getting any better. Every time Lauren doesn’t feel good, I go into panic mode. Flash backs are so real. These feeling are so real. Not sure if I could live through this image again. Lauren is not in the hospital, but this is what I see in my mind, when I think about Lauren when she doesn’t feel well.

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Lauren’s immune system is compromised from the heart transplant. She needs to be very careful of any sickness that is going around. With all the sanitation and Lysol I use in our house, I cannot kill all the germs. Impossible to say the least. Life is around us.

Many germs can cause pneumonia. The most common are bacteria and viruses in the air we breathe. Your body usually prevents these germs from infecting your lungs. But sometimes these germs can overpower your immune system, even if your health is generally good.

On Monday, Lauren went to her doctor. After her exam, they sent her to the hospital for a chest X-ray. The X-ray showed she has pneumonia. Thank the Lord, the Dr.’s said we caught it early. No hospital stay, they put Lauren on Zithromax Z-Pak. So the next week, I am praying the medication works and takes care of her lungs.

With cold and flu season here, please be mindful of your surroundings. Germs spread everywhere.

Lynne 1437940979_love_valentines_day_11

Two Historical Dates

November 18, 2015 Lynne13242 Comments

What is going on in this world?

We now live in such a different world than our parents lived in, with all the technology we have, is the world really a better place?

The USA was attacked on 9-11. Paris was attacked on 11-13

Those two dates are important to everyone now, but they were always important dates in my family. My birthday is 9-11 and my son, Michael’s birthday is 11-13. What are the chances.

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Our hearts go out to all the families that lost loved ones on those dates.

Lynne 1437940979_love_valentines_day_11

Message from Ireland

October 8, 2015 Lynne1324Leave a comment

I felt the need to post this message, if anyone would want to attend the service if you live around the world. It will be webcam. In the USA here it will be at 7:00a.m. Please check your time differences.

Cian will be reposing at his home today, 34 The Village Green, Carlanstown from 2pm – 8pm. Removal on Friday morning (house private please) for funeral mass at 12 noon, Mass of the Angels in St. Colmcille’s Church Kells. Burial afterwards in Staholmog Cemetery. Cian’s mass will be streamed live for all his friends worldwide at http://www.kellsparish.ie/our-parish/webcam 💜

Lynne

A mother’s message, Lisa Cian’s Mammy

October 7, 2015October 7, 2015 Lynne13244 Comments

This morning, Cian’s mother Lisa wrote a message of thanks and love

“I want to thank everyone for the messages of support during this difficult time. I haven’t read most of them yet or answered you all but thank you. Donal, Chloe and I are completely devastated by the loss of our beautiful little Cian. I am just so honoured to be called Cians Mammy. He thought me so much and definitely made me a stronger and better person. He made alot of people better people. In a lifetime no one would endure what he did in four short years yet he always had a beautiful smile on his face. I love my boy so much. I can’t imagine what is ahead and life without him. No parent should ever have to endure the heartache of losing a child. I can’t describe this awful pain. I’ve never felt pain like it before. I’m going to try to be strong for Chloe and Donal and I know Cian will help us too. Our house was always full of chat and fun because of Cian. Peppa Pig was always on. He bossed me around the place and I loved it. He always told me he loved me. I’ll miss his lovely big hugs and kisses. I’ll miss our busy life. Anybody who met Cian or heard his story were touched by him and loved him and his beautiful personality. I am so proud of Cian. Last night hundreds of people gathered outside our house with candles and sent lanterns into the sky. They even sang one of Cians favourite songs “Twinkle Twinkle Little Star”. It was so beautiful.
Cian was always such a special little boy, now he’s a beautiful angel.
I hope you are happy little man wherever you are and I promise to keep your memory alive. I know I’ll see you again. Thank you for everything.”

I love you so much forever. From your Mammy x

My message to a mother who lost her little man, who never received his transplant

Lisa, I cannot even imagine the pain you have within you at this time. Your son Cian, touched my heart following his journey. The love that the world showed, with all their support in helping Cian in achieving the funds to be eligible to be able to place on the double lung transplant list in Boston. I have many times, wrote about Cian on my site to help get his story out. Many of my followers, sent messages of hope and prayers for your son. Cian will always be in our hearts, and never forgotten. I showed my husband yesterday the post I wrote. As he was reading it, tears were rolling down his face. He told me, he cannot imagine the pain a family must feel in losing a child.

I truly feel that, Cian’s journey should never be forgotten. My daughter Lauren was placed on the heart transplant list on March 13, 2013. She received her gift of life on December 30, 2013. Just as Cian had a very rare disease, my daughter Lauren was also diagnosed with a very rare muscular disease called Laing Distal Myopathy. We were told that, there are only five other people in the world with this disease also. And Lauren also has Scoliosis. When she admitted into the hospital, Brigham and Women’s in Boston Ma., she was in heart failure at the time, that is when they brought up a transplant.

I truly feel people need to be educated about transplantation. If you need one, you are not automatically place on the list, like the movies perceive. So much is involved in the process of being accepted. We were very close that Lauren was not going to be placed. I can remember many nights praying that Lauren will be given the chance for a second life.

When I think of all the thousands of people who helped Cian raise the funds he needed, to come back to Boston to be able to be placed on the transplant list, it is very humbling. My feelings, I believe our world needs to change. If you have insurance, I find it unbelievable that the hospital in the USA wouldn’t accept it. I know this will not bring Cian back, but I feel this needs to be addressed.

From one mother to another, sending prayers to your family from ours

Love Lynne

I have a follow button on my site, if anyone would like to follow my post. Thank you

lrobitaillecld@aol.com

Cian is with the Angels now…. lost his fight on earth, but will always be in our hearts

October 6, 2015 Lynne1324Leave a comment

Sometimes real super heroes live in the hearts of small children fighting big battles

Cian McDonnell-Lynch. Lost his battle on October 5, 2015

A quote from the family ; “Our beautiful boy is with the angels now. He fought so hard. Heaven is so lucky to have him. We are broken hearted. His Mammy, Daddy and big sister Chloe held his hand until the end. Fly high our beautiful boy where there will be no more suffering or pain”.

I am writing this post with a very heavy heart. I personally did not have the privilege to meet Cian, but I have felt a very strong connection to him and his family during his fight for life. When I would read his mother’s post, I could relate and feel her pain in her words she felt for her child. I have contacted with the family, through their site, to give my support and express prayers we’re being sent out to them.

Cian was admitted to Crumlin Children’s Hospital to have his procedures, which was a liver biopsy and PEG insertion. The results of the biopsy was to determine, so that he may return back to Boston to be placed on the double lung transplant list. Unfortunately, during his recovery, this brave little soul, endured complications with his oxygen saturation.

Cian was surrounded with his family. His mother, father and big sister held his hand until the end..

Cian was loved by thousands of people. The fundraising events to help raise the money for his transplant was heart touching. During his short time on this earth, this little guy brought so many people from all over the world together.

To his family: My family here in Massachusetts USA, we are sending our heart-felt condolences to you. Cian will always be in our hearts.

Below is a brief summary of Cian’s medical condition.

Cian who was only four years old and his family traveled to Boston Children’s Hospital in the hopes that one of the world’s premiere hospitals can help keep him alive.
Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth. It’s a very rare disease
It affects one in a million. And Cian is actually at the more severe end of the syndrome.
The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.
They’re actually microscopic blood vessels; they’re malformations, and the oxygenated blood is not getting around to his whole body.
They were told, that it’s actually progressing very quick, so they we’re just really hoping that he’ll be accepted onto the transplant list here in Boston.
Cian was given only a few months to live.
Cian was the first child that they’ve seen with this condition, It’s just so rare. Cian needed a double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
Cian and his family came to Boston Children’s Hospital as their last hope. The hospital begun running tests on Cian to determine if his body can handle the transplant.
The family’s Irish insurance policy will not pay for the surgery here in the states.
Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.
That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated. They were so close to reaching the amount that they would need to give Cian his gift of life. Last count I believe they were at $600,000.

http://www.hopeforcian.com

Please keep Cian’s family in your prayers.

Cain is now with the angle’s, in the sky. I would like to dedicate this song to Cian.

With much sorrow, Lynne & family

Rainy days,

September 30, 2015 Lynne13242 Comments

When it rains, it brings back so many happy memories

“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