HLHS

Frustration Overload

Tch-bostonThis week has been challenging for many, not just myself or our family. Some people have had to hand over their loved ones for surgery. Others continue to struggle in search of employment. Many have struggled with the elements, the weather and the cold. Overall, it’s been a sucky month to say the least.
I will be happy to see February move on as I enter March with new possibilities like a different position and my first fundraiser at the end of the month. Honestly, I started off gangbusters with my flyer, initial meetings with people and my big dreams of a fun evening to raise money for our favorite hospital. Then life happened and days were passing before I knew it. Mamma mia’s never got back to me. We have to visit Panera. What about Stop and Shop or Shaw’s? Thank GOD my sister in law is helping me with restaurant gift cards otherwise I would be late with that in addition to the program!
Lately the buzz about Children’s hasn’t been helping. I mean, did I know they kidnap children? And do experiments on them because they are wards of the state?? No one in their right mind should bring their child to the top rated hospital in our area! Seriously?? two sides to every story and I am going to go out on a limb here and say what I really think about families who claim they don’t know what they were signing. I don’t believe them. There is not a single moment that I didn’t know what we were signing for Isabelle or 10 years ago for Liz. Staff went over everything, because they know the liability of what can happen if they don’t. People believing everything they see online is making my head spin. And I know not everyone has the experience that we have had but we have had this experience because we ask questions and I can be a total bitch. You want to run tests, take vitals or use her as part of your research experiment, sure- I will let you as long as she doesn’t burn off a thousand calories or hurt herself. And if my gut tells me they need to stop or she needs sleep, not her blood pressure checked then I will tell you. When she needs to rest and I know that is what she needs, I will tell you that. If I have a concern about her sats or fluid intake, I will not speak to the med student and bypass right to the attending. Just ask my husband. He may make hand motions to signal me to calm down most of the time we are there, but if anything ever happened to her I can honestly say I did everything I physically and mentally possible- no matter how small- to take care of her.
Ok. Got that off my chest. It’s been killing me to see the posts on BCH’s pages full of hate and complete ignorance, trying to take away over a hundred years of excellent health care over an incident that only half the story has been able to come out. The crazy half. That crazy half is not going to change the fact that when my husband was vomiting blood and no one knew why, Children’s saved him. It will not change when Elizabeth looked like a tumor was growing out of her neck and they knew exactly what to do for her. And it will never change the fact that in spite of missing an entire side of her heart, Isabelle is like every other 18 month old following her sister around. Nothing. No amount of posts or taking my photo and writing stupid crap on it will change that.

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Boston Children's Hospital, HLHS

Home Turf

Over the past few days I have been witnessing people at their worst. People who are making assumptions without knowing the facts, and people who are blindly posting their ignorance in response to a public statement made by Boston Children’s Hospital on the recent Pelletier case. Even Beck, in all his funky glory, has weighed in on the conversation. He claims to know the story, yet still believes this girl is at BCH. She is not. I don’t know where she is but I do know the hospital is no longer ‘holding her prisoner’.

She has become a ward of the state because of evidence that none of us other than the defense and the prosecution saw. Her parents are riling up the general public in hopes for support. They claim she was kidnapped and that they lost their parental rights to her and her care. All the claims make Boston Children’s responsible. My question is, responsible for what? For acting on their conscience and reporting something they felt strongly about? For taking on a liability as expensive as getting the state involved in this situation and taking a child away from her family because they felt it was for her own protection? Here is what people don’t understand- it takes a lot of evidence for a child to be taken like this. A lot of evidence none of us has seen. If it comes out that these conspirators are correct than by all means, serve me a crow on a plate sunny-side up.

Both sides of this have not been presented because of the gag order that apparently, not everyone paid attention to, including Mr. Pelletier himself. Claiming her life is in danger, he is breaking his ‘silence’ on what is going on. The support he is getting is ridiculous. People have been posting about how they themselves lost control over their loved ones’ care at hospitals, about how BCH is like Auschwitz, and how they should storm the hospital to free her themselves. Here’s the thing: for every procedure that was done to Isabelle, we had to sign consent forms. Staff went through what we were signing with us. We never felt coerced to do anything we didn’t feel was in her best interest. I have copies of the forms in a folder that is 2 inches thick. We signed consent for everything they did. Everything. There is absolutely NO WAY I could ever claim that I didn’t know what I was signing. No way.

So I don’t believe these people. I don’t believe that they are 100% innocent bystanders while the nurses and doctors ‘chained’ their daughter to her bed. I don’t believe that she has mitochondrial disease on the grounds that if she did, they would have found it when they were covering their bases for this case. I don’t believe a doctor’s ego has the power to make decisions against a family’s wishes. It didn’t happen to us because I have learned to be my daughter’s best advocate. I have learned to speak up in a way (ok, not all the time.) that allows me to be heard during rounds, tell the staff things like “no vitals, she needs to sleep” and not have Dept of Child Protective Services at my doorstep. It didn’t happen to us. I can be pretty aggressive when a primal instinct like protecting my daughter is set off but not once did anyone at BCH say to me “You need to leave.” Ok, maybe our NP did tell me that but it was in the interest of me getting rest so I would be able to handle the challenges that lay ahead. And she was looking out for her nurses.

The way I feel about Boston Children’s is kind of how I feel about my high school. Let me explain.

I have had a lot of mixed experiences in high school, some great and some not so great. I have had to endure some hard times, loneliness and feeling like it was never going to end. I also felt joy, made some incredible friends, and have a sentimental connection to all who have been there. At Plymouth North, I walked through my own personal fires and I carry those experiences with me. I feel passionate about both places because they are my home turf. Places where I had gone through intense emotional growth. I had my heart broken in these places. I had it put back together. I met incredible people with whom I would run into a burning building for. When I used to go to the old high school, as broken as it was, it was still where I spent 4 years of my life day in and day out. A piece of my life was in those walls. Same with BCH. We have spent many days in those halls, rooms, labs, and offices. We have gone through such great emotional upheavals in those halls. And it isn’t over yet.

Yesterday Izzie was having a blast singing “Twinkle Twinkle Little Star”. She was singing it when her new GI doctor came into the room. He smiled and began singing it with her. I thought to myself “I love this guy. He gets it. He knows she has been through a lot, and wants her to be comfortable.” It was our first appointment with him and I am so grateful we have another incredible experience to add to our collection. BCH gave me that experience. It gave me a beautiful daughter who loves her family and enjoys life in a way I can’t describe. She is a blessing that we weren’t sure we would have. I will never turn my back on the place that gave her to us. The place that showed us how to take care of her, how to help her thrive. A place that will keep her heart beating and that respects us as parents.

HLHS

A Reality We Cannot Forget

I should be at the gym right now. I should be in a cycle class, on a treadmill, or on an elliptical machine. Instead, I am sitting here with my cup of coffee, in tears, and terrified. Last night before I went to bed there were multiple posts about a mom needing help to get her son transferred to Boston. Two days ago he was fine. Last night, he was in the ER at his local hospital. No warning. No signs. No mercy.
There is one particular mom who is also a nurse and part of the BCH family. She was doing everything she could to help him get transferred to Boston. All of his surgeries were done here, and he needed to be where people knew how to take care of him. She was posting, calling, trying to get one hospital to speak to the other (at least, that was my impression from the conversations) and I was amazed at the lengths she was going to in order to make this transfer happen. She can be on my team anytime.
This morning I got up, had a cup of coffee, got into my gym clothes and checked my phone to see if there were any updates. I had prayed for the family before I went to sleep and was hoping that there would be a message about getting ready to fly to Boston. They live 8 hours away.
Instead, there was news that he lost his fight 30 minutes after I went to sleep. They were in the process of notifying family and I am sure the mother was in complete shock. Dumbfounded I sat in front of the computer in tears. This little boy, whom I have followed on Facebook since I was pregnant with Isabelle. Little boy with a big smile, brown hair, and who had the same defect as Isabelle. Little boy who a few days ago, was playing and happy.

What gets me about this is how unpredictable CHDs are. I know people look at Izzie and think she looks great. She does, but there is still a time bomb in her chest. That will NEVER go away. We can live each day as if that weren’t the case but it always is in the back of my mind. I cannot imagine losing her so unexpectedly like that, but I know this mother felt that way too. Surgery is PALLIATIVE. It isn’t a cure. It helps her survive to the next step- whether that is the next repair or a transplant. It will never go away. And that is true for all CHDs. I know there are people out there who have had repairs and act as if that were a chapter in their lives that is over. I know these people personally, and it surprises me that they are so disconnected from their history. Surgery is not a cure. Children still die from CHDs even after they are ‘fixed’. Some of these people have done nothing for CHD awareness as if it doesn’t apply to them. Well, I am fixed, so I guess I don’t need to wear red or post anything about my experience. Yes, I am judging. I am judging because someone died last night to a disease some survivors pretend not to have. It makes me so angry that another mother is going through a loss so terrible I have nightmares about it.  I am judging because people should know more about the most common birth defect in the world. A silent killer just like cancer. The end result is the same.

When our children reach milestones, we all celebrate together. When someone’s child dies like this, we all mourn with her. A mother’s cry rises up to the heavens while we all stand silently beside her. There is not one dry eye in the HeartLand this morning. This was one of our boys. Our CHDers. Our family. I have never met this little boy, but this morning my heart is broken. The loss is terrible and resonates within me and countless other heart moms who have prayed all night.

There is no cure for Isabelle. I don’t know how else to say this. She is doing well and we have been so blessed. But both of us wonder when our good fortune or if our good fortune will run out. This family lived 8 hours away from Boston. Another point I would like to make is how grateful we are for being an hour away from our Heart Center. I cannot imagine how powerless this mother felt as she struggled to get him where she knew he needed to be. Stop for a second and imagine watching doctors, nurses and trauma teams try to resuscitate your child while you stand helpless by their side. A child you cared for, protected, and loved. There is nothing natural about losing a child, regardless of the disease. Please keep this family in your prayers. Our hearts are with them.

HLHS

Thank you

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This morning I wore a red shirt to the gym in honor of Day 1 of CHD awareness week. I had a goal to run a mile nonstop. I need to get back into daily workouts, I need to lose two sizes. I stepped on determined. As I began my session on the treadmill, I tried to envision great power running through my clumsy legs. I managed to maintain a slow pace, and not much else. My breathing became erratic. The controlled inhales and exhales were becoming jagged and the rhythm difficult. As I struggled to keep up with my goal of running a mile nonstop it hit me.

This is what If feels like to be Izzie. Running, trying to keep up with a circulatory system that doesn’t match the desire to run, play and be a toddler. She stops to catch her breath from time to time. For her, it’s normal. As her mother, I know it’s not.

I wore red today for her and for countless others affected by congenital heart disease. It is a terrible, terrible disease that can strike without warning, and with no reason. It has taken beautiful children I came to know and love on Facebook. Robbed their parents of the opportunity to raise them and ripping their own hearts out in the process. As I went through my day thinking of these precious babies, I saw red on my fellow heart mamas walls. My heart lifted with the support I could they were getting and the. I saw my own.

Picture after picture, post after post showing support for our HLHser. For me. For Chris. For Liz and for Addie. This disease affects us all. We all worry, we all struggle though inpatients, doctors appointments and ER visits. All of us. It’s hard for them when one of us isn’t home. Our extended families help out tremendously, but it still takes it’s toll. I will never forget showing Addie on a model heart that had four chambers the anatomy her sister has, “But mommy, she needs four chambers, not two!”

Words cannot express how grateful we are to all our friends and family for the simple gesture of putting on a red piece of clothing today. In a world whose focus isn’t so much on children’s’ illnesses, it lifts us up when you show us that you have our back. You know it’s hard. You understand what is at stake. And you care. I could not believe the people who wore red for us and at the end if the day, to hear that Massachusetts has proclaimed this week to be the official Congenital Heart Disease week was awesome. Especially since it was proclaimed in honor of an amazing little guy named Joey who passed away very unexpectedly last year.
The Heartland was never a place I saw myself being in. I didn’t really know it existed. I couldn’t be here without any of your support. My strength that people have told me that I possess, comes from all of you. Thank you from all of us for standing with us today!

HLHS

Remission Doesn’t Exist in the Heartland

As many of you know we are planning a fundraiser for Izzie’s Miles for Miracles Team which in turn raises money for Boston Children’s Hospital. I chose this charity because of the universal opportunity investing in a children’s hospital provides. Many children we know have been patients this past year on 8 as well as floors 6 and 9. I thought that people could identify with knowing someone and feel a connection with the hospital. Izzie is a patient partner, which means her story is what has inspired two runners to take on the Boston Marathon in her name. It’s incredible. Her heart disease is why we have moved in for days, weeks at a time so I felt that our effort could be focused on the place that have her life.

I decided to have a silent auction to raise additional funds and Chris emailed the home teams’ charities to see if we could get tickets to have at our auction. So far we have been accepted by the Red Sox and that’s it. My brother and sister in law have been kind enough to provide some Bruins tickets, and another cousin is trying to help me get some goodies from the Garden. I was (and still am) thrilled that people want to donate. Until I received an email this afternoon from the New England Patriots declining to help us out.

Dear Elissa,

The New England Patriots Charitable Foundation received your request for a donation. Unfortunately, due to the volume of requests we receive on a daily basis, it is impossible to accommodate every worthwhile cause. Therefore, we must respectfully decline this opportunity to assist you with your efforts.

We wish you the best with your fundraising endeavors.

Sincerely,

The New England Patriots Charitable Foundation

I didn’t realize raising money for Boston Children’s wasn’t a worthy enough cause for you to spare a set of tickets for the nosebleed section. BCH is the only reason why she is alive so to me, raising money is important. Her surgery did not cure her. She isn’t going to instantly grow a left ventricle. Doctors can’t make one. She will always have this condition. And what I don’t understand is why I am constantly blasted by messages about pediatric cancer while there is nothing NOTHING about congenital heart disease on television. Why is cancer more tragic than having a child who has to undergo countless surgeries, be exposed to more radiation than any person ever should be, or suddenly drop to the ground in front of their parents’ eyes? Tell me how that is different and deserves more money than a condition that will never go into remission.
Watching the Super Bowl last night and an ad comes on for a World Cancer Day on Feb 7. Really?? On the same day CHD awareness starts? Are you fucking kidding me??? Why is it ok to keep pretending as if one disease is worse than another? You think I enjoy watching my daughter gasp for breath after running around my living room or turn blue for no apparent reason? Do you think I don’t worry about her next surgery when I try to sleep at night? You think I enjoy feeling the wires that hold her sternum together when I get her dressed? Her disease stares at me in the face as much as cancer stares in the face of other parents. Sometimes I feel like CHD is something we should be ashamed of, or that people don’t want to talk about. Shaun White certainly doesn’t want to. He’d rather raise money for St Jude than to speak about his tetralogy of fallot- a disease that recently took a beautiful girl from her mother’s arms yet he can represent our country at the Olympics. The freaking Olympics.

Most of the time I enjoy every moment I have with Izzie. Then I have days when I wonder what her quality of life will be like.
Raising money for Boston Children’s helps her outlook. It helps the researchers who are trying to find an answer as to why these defects happen. They want to know what gene is responsible for affecting the structure. And yes, they are genetic so those if you who have been repaired and think you are cured- think again. Your son/daughter should have an echo to rule out any structural issue. But how would you know that? It’s not like there are any public service announcements out there telling you about the latest genetic findings or how these defects can tear their ugly heads. No, you’ll just read about these student athletes who suddenly drop dead because they had a defect that went undetected.

I know what I sound like right now.  I wish we didn’t have to constantly compare diseases. However when I hear about one organization raising millions for pediatric cancer in one day while the Children’s Heart Foundation is grateful for the $100,000 they raised over a few months, I want to scream. I want to scream what about my daughter? What about us? What about the children who have surgeries and then have complication after complication? Who is speaking for them? I am not speaking, I am shouting from my own rooftops. CHDs are not cured by surgery. Isabelle will ALWAYS have half a heart. The fontan surgery that she will have in the fall isn’t a great solution. It will add stress to her liver. Her heart will eventually weaken. Did you know the right ventricle is not meant to pump to the body? It is designed for the lungs alone. As it stands right now, she will need a transplant when she is a young adult or maybe even sooner. One never knows. Just like one never knows when cancer is gearing up for a comeback.

To my friends whose children have suffered with cancer, I am sure this must seem like a “whose disease is worse” argument. They are both terrible things that happen. One happens to healthy children and the other children are born with. Both can die from it.  My point is that CHDs and cancer have similar outcomes and should be treated as such by the media and by the world. For example, The American Heart Association can give the red dress a rest and inform the public on congenital heart disease. If you are dealing with the heart, than deal with ALL of it. Not just the conditions brought on by poor diet, smoking and lack of exercise. Deal with the conditions these babies are born with by no fault of their own.

Imagine that your child has an illness that people can’t see. It is unpredictable and wreaks havoc on families. It puts a strain on your marriage or costs you out of your home. It puzzles physicians and specialists. No one knows what causes it. It is an illness that has taken many childrens’ lives, some of whom you knew personally. It is a condition that happens to one in one hundred babies born every day. But no one talks about it. There are no big corporate sponsors that declare special days for it, spokespeople who advocate for it, or even similar organizations like the American Heart Association that dedicate any information on it. It’s silent. Imagine watching your child go through hell only to feel like the battle isn’t over. It’s just one more fight to get through another day, week, month or year.  A life where you can’t go outside for fear of that child getting a virus. Imagine having a child that you have to say goodbye to after every possible treatment has been given. Sound familiar?

Who wouldn’t get angry? Who wouldn’t want to scream from the rooftops? And yes, I took folic acid. I took prenatal vitamins, ate well AND exercised. I felt great. I don’t drink or smoke, and I was thrilled that we were adding to our family. When the sentence “There is something wrong with your baby’s heart”  was said in the examination room, I couldn’t believe what I was hearing.

Funding= research. Research= better solutions. Better solutions improve the quality of life. BCH already has made some incredible headway with the left ventricle recruitment surgery they have started to implement. It helps a child have four chambers instead of two or three. People fly from all over the world for this type of surgery. Our surgeon is part of that team who came up with it. I asked him if he thought Isabelle was a candidate. He wrote back and apologetically told me that unfortunately she wasn’t. Here is what said to me:

I will continue to fight for children like Isabelle and do what we can. I really appreciate the courage that you as parents show on a daily basis, and is the inspiration to keep me moving forward.

Help us keep fighting. Help him keep fighting. The Heartland is merciless and research is all we have to light our way with hope.
No parent should have to see their child suffer like we have, and other parents we know have. Regardless of what the name is- pediatric disease is reason enough for people to get together and fight it. As long as children are dying from it, there is no excuse for silence.