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Logan’s Story

When Logan was born he was diagnosed almost immediately with Marfan Syndrome. As a result of having Marfan, Logan has long arms and fingers, as well as long legs, and he is also nearsighted (we just recently purchased his first pair of glasses). More importantly, Marfan affects the heart. Logan was born with leaky valves. At this point we are mainly focused on his mitral valve, and his aortic valve.

When he was born his cardiologist told us that at some point Logan would need to have his heart valves repaired or replaced, but he felt with medication we would be able to hold off on it until he was at least 5-6. Mark and I accepted that, and decided that we would make the most out of those 5 or 6 years that we had before surgery. 

Toward the end of June I noticed that Logan just didn't seem right. He was coughing, and had suddenly lost interest in solid foods. I brought him to his pediatrician, who told me that Logan had a cold and that mucus was running down the back of his throat making him sick, and that is why he wasn't eating.

After about a week, he still didn't seem to be getting better, so I decided to bring him back to the Dr, just for a once over to ease my mind. I expected the doctor to write a script for an antibiotic and send us home. What I got was a doctor that I had never met before who told me that Logan didn't pass the "sight test" and that she was calling an ambulance immediately.

When we got to the ER the doctors took a chest x-ray (i assumed that they thought that he had pneumonia), and when the results came back I was told that Logan was in congestive heart failure. It was explained to me that Logan's mitral valve was allowing too much blood through, and his heart had to work extra hard to pump the excess blood, which caused it to build muscle and enlarge. The heart enlarging forced the valves to stretch more thereby allowing even more blood to get through which made the heart enlarge more creating a vicious and repetitive cycle.

We spent just over a week in the hospital, and were released hopeful with a new and improved cocktail of meds.

On 8/16, Logan went to his cardiologist for his regular check up. We expected to hear the usual "no change, see you in 2 weeks", but what we were told instead was that Logan's heart had enlarged even more, and was basically taking up the space where his left lung is, and as a result, that lung was no longer working. We were then told that Logan would need to go into the hospital the next day.

Latest Journal Update

Many Thanks!

I'm sure some of you have wondered why I never post here. You would think that I would be the one writing all of the updates, or at the very least chiming in every once in a while. Sometimes I feel guilty because it's not me. The truth is, I don't even read the updates that Mark writes. I think everyone in life has their own "thing", we all handle stressful or scary situations differently. For Mark that "thing" is caringbridge. He finds comfort in telling everyone what is going on with Logan while he is sick or in the hospital. It gives him a small amount of control over a situation where we as parents are at the mercy of doctors. I appreciate that for a number of reasons. The main reason is that it keeps him from talking to me too much. Yup, I said it. The days leading up to surgery were difficult for me. I knew it was coming, but didn't know when, and that makes for sleepless nights, which makes for a cranky mom/wife. The day before surgery when I had to tell Logan what was going to happen to him was heartbreaking, watching him go through withdrawl was the hardest thing I have ever experienced in my life, and the last thing I wanted to do was to take time away from Logan to find a way to describe my emotional breakdown to everyone, or make small talk about normal things. I just can't get my brain to go there. I know that Logan has a huge fan club out there, and that you all want to know how he is doing, and I appreciate that more than you will ever know, so I am thankful that this is Mark's thing. Being at the hospital to advocate for Logan when things didn't seem right, comfort him when things hurt, and do small things like change his diaper myself rather than have a nurse do it gave me my own sense of control. Being there and paying attention to and learning about every thing that is going on, and questioning every single thing that a nurse or doctor does is my thing. There is something profound that happens the moment you become mom. You have a need to be able to make things better for your child. I can't make Logans need for surgery go away, and I can't take away the pain, or the anxiety, but I can run my fingers through his hair,rub his hand, kiss his boo boo, and wipe away his tears. I NEED to be able to do that for my own sanity. Mark and I have found our places in these situations, and I guess you could say that we make a great team. The thing that makes it work is that we both agree that in life your family and friends are the most important things that you have. At the end of the day, there is no amount of money, no gift, or grand prize that is worth having if your family and friends aren't there to share it with you. In order for us to be a whole complete group of family and friends we need Logan, and to make sure that we ALL have Logan, Mark and I agree that the best place for him to receive his care is in Boston. We also agree that when Logan has surgery it is best for us to all be there as a family. We knew that Connor and Logan have a special bond that only brothers have, and that they would need to see each other during Logans stay to make family time as normal as possible and to help each of them understand and deal with the situation in their own unique way. What we didn't know was how much it would help them. The first time Connor and Logan saw each other post op, they both changed as soon as they made eye contact. Connor is usually bouncing off the walls and full of excitement, and Logan had just had surgery, so he was uncomfortable and cranky. Connor walked in Logans room, and he became a quiet gentle soul, and Logan perked right up, and tried to play. It was as though they are connected spiritually. They each became the person that the other one needed to see. It was definitely a moment I will never forget. 
I guess the point of all of this is to let you know how thankful we are that we have all of you, because you are all family to us. We also want to give credit where credit is due and let you all know that that there is a lot of behind the scenes help that happens to make sure that we all get to be together in Boston, and to say thank you to the unsung heroes that scrambled at the very last minute with me to make sure things fell into place. Sorry for the length, but I promise if you bear with me and read to the end you will understand why it had to be this way. 
When Logan had his first surgery, one of the very first people I met that wasn't a doctor was Ethan. He was 6 at the time, and had blonde hair and the biggest most amazing blue eyes you have ever seen. He was waiting for a heart transplant, so he had his own room at the hospital. He also had his own badge to get in and out of the ICU doors, and was allowed to make morning announcements for rounds. He was an ICU celebrity, and he gave me hope. He gave me so much hope because despite everything he smiled every day. All day. Ethan was hooked up to oxygen 24 hours a day, walked around with an IV pole, and wasn't allowed to drink water because it would cause excess fluid to build up around his heart, yet he smiled. I didn't know then because everything was so new to me, but I know now that he smiled because his family was all there. His mom Jessica, dad Erik, and brother all uprooted their lives in Chicago and rented an apartment in Boston so they could all be together. Sadly, in 2012 Ethan passed away. Im sure he was scared and sad during his last moments here, but I have no doubt that he knew without a doubt how much he was loved by his family. A while after he passed away Jessica emailed me and a few other heart moms that were in Boston the same time we were and asked us about things that would make staying in Boston easier. We all suggested things like having access to a washer and dryer, help with parking costs and more inexpensive places to stay for parents. With those suggestions in mind Jessica and Erik started the Ethan M Lindberg Foundation. www.ethanlindberg.com The foundation raises money and helps Boston heart families with medical expenses. The foundation also signed a lease for an apartment in Boston that is within walking distance to the hospital. Despite the $60k per year price tag on the apartment, the Lindbergs only charge families $50 per day. Mark, Connor and I were the first family to stay in the apartment, and I just cannot say enough about it. They thought of everything. There is even a maid service that comes every other week because Jessica said that parents have better things to do than clean up. Without the Ethan M Lindberg Foundation, I'm not sure we would have been able to all stay together the entire time Logan was inpatient. 
Another behind the scenes player that has been incredible to my family since Logan was a baby is John Smith and the Albany County Correctional Facility for Children's Benefit www.accfcb.org They have helped us with everything from literally putting a roof over our heads, to reimbursing us for travel costs, to providing Christmas gifts. The foundation members are the first to check in to see how appointments have gone, and ask if there is anything else we need. They have become family. One member who shall remain unnamed offered to take our lucky man to Vegas as soon as he is of legal gambling age. We shall see my friend.. ;) 
With that said, Mark, Connor, Logan, and I would like to say thank you to John Smith and the ACCFCB, and Jessica Lindberg and the Ethan M. Lindberg Foundation. We will forever be humbled and thankful beyond words by your support and generosity. 
I would also like to ask you all if you have a spare moment to check out each of the organizations web sites and see the many, many wonderful things they do, and the children they help. To those of you that have asked what we need, the answer right now is absolutely nothing, and thank you. If you would like to honor Logan consider donating to either the ACCFCB or the Ethan M Lindberg Foundation on his behalf so that perhaps another family that might not otherwise be able to afford the care that their child needs will be able to get support because of yours. 

All My Love & Many Thanks,

Stephanie 

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Comments

6 Comments

Roger-Cyndy Wilber
By Roger-Cyndy Wilber
While we only know your family through Mark (when he worked at Staples and we shared our own experiences with Marfan), we have followed Logan's story ever since,,, and each and every day you cause us to be grateful that there are parents like you "out there" who not only do everything for their children, but who are willing to share their "walk" with others, who learn from your experiences and often drive us to our knees in prayer. Bless you all <3
Doreen Wheland
By Doreen Wheland
This brought tears to my eyes. I'm so glad that you got the help that you needed to keep your family together and to make your life a little easier during this difficult time...what a marvelous Gift!!! Yes, you are all a team and an amazing one for sure! You ability to see the positive comes shining through! God bless you!💕
Jess Keil
By Jess Keil
Beautifully written, Steph. Sometimes it is hard to get the right words out in how you're feeling and how you want to express it. Easier for some than others. But good job!

Logan is in our prayers nightly!
Sue Bango
By Sue Bango
I'm sure I have never met a more loving and caring family. I feel honored to know you.
John Smith
By John Smith, President
Stephanie, very nicely said. Also, it is our honor and pleasure to help your family and thank you for your very kind words!!
Maya Z
By MBZ
<3