We Got Dates!

Things just got real, very real!

October 11th will be Carson’s first appt in Boston. It will be for pre-op testing including a sedated echo and blood work along with meeting the surgeons, signing papers etc.

October 14th Carson will have a cardiac cath.

October 15th will be surgery.

I still do not know if Carson’s insurance here will cover him. If it wont we will have to go to Boston two weeks prior to any appointments and get him on state insurance though Massachusetts. So I should hear back in a couple weeks from patient financial services and we can plan our trip accordingly.  

Wow, thank you!

Inspiring, hectic, exhausting, trilling, amazing, selfless, incredible, are all words that describe yesterday’s fundraiser. 

Image

In case you didn’t know we held a Carwash/Rummage Sale yesterday in a shopping center parking lot close to our house and it went better than we could have ever imagined.

I have always said that I try to focus on the positive while walking through this amazing journey with Carson. Yesterday just reiterated that amazing, selflessness that people have. It was so inspiring to see complete strangers stop, some of them just handing money out their car windows just for Carson, others stopping to see what we were rummaging find something they like, ask how much and when I replied $2 they said how about $20?

I’ve always been so proud to be Carson’s mom but seriously days like yesterday just bring tears to my eyes. My son is an inspiration to people I don’t even know. People are willing to bend over backwards for my family even though they hardly know us. I couldn’t be more proud to be Carson’s mom, and to be from a community that can come together and show support like they did yesterday.

I dont know how I could ever express my gratitude towards everyone. I just want to say thank you. Thank you from the bottom of my heart! Thank you to everyone who donated to the rummage sale and carwash, thank you to everyone who loaded up trucks, and helped us set up and clean up, thank you to everyone who helped with the rummage sale, thank you to everyone who helped wash cars, thank you to everyone who came by, who donated, who showed their support, who held signs, who have been praying, who were there in spirit, who care about my son and my family. Thank you, Thank you, Thank you!!! My heart is so full of love!! 

Image

We’re Going to BOSTON!!!

It’s been confirmed, the cardiologist and surgeon agree that Carson is a Bi-vent candidate! I am waiting on a call from the surgical scheduling department to schedule his pre-op appointments as well as his surgery. We are planning for mid-October and since its several months away there should be plenty of availability. 

People keep asking what do we need? Or how can they help?

The surgery recovery is expected to take 2-3 months. We will be packing up our little family and basically moving to Boston for as long as Carson needs. There is housing available for families that travel to Boston for medical needs but it is not free. We need help raising funds for travel and living expenses while in Boston.

I have a page set up for direct donations: http://www.gofundme.com/carsonsheartjourney

We will also be organizing fundraisers between now and when we leave. 

August 10, 2013 we will be having a Rummage Sale/Car Wash in the Tuesday Morning Parking lot, 1000 E. Route 66, Glendora, CA 91741 from 7:00am-4:00pm (If you would like to come help hold signs, wash cars, or even bring items to sell at the rummage sale please contact Carson’s facebook page http://www.facebook.com/carsonsheartjourney)

September 14, 2013 there will be a yoga class held for Carson at Bikram Yoga Studio (more information to come)

We will also be having a poker (bingo) night, and a dinner along with a silent auction.  (dates to follow)

We also need the following:

  • A banquet hall (to host dinner and auction)
  • Items to be donated for the auction

 

 

Ramblings of a Heart Mom

I have no answers, just a million questions.

We got the second opinion email today. I have learned to expect nothing. I was growing to accept that my son my live a life with a single ventricle heart. 

I sent his file via fed-ex 3 day shipping late the 14th. So it wasn’t going to ship till the 15th and it wouldnt arrive till the 19th. They told me to expect it to take two weeks to get a response. Its only the 24th and I got the email. 

Upon opening it I felt like I won the lottery. You know how you read in your head faster than  you do aloud? Well I was reading it aloud to Nick but was ahead of what was coming out of my mouth. I could barely get the words out. 

“After review of these studies, it is my opinion that a biventricular repair is indicated at this time. The catheterization shows a well functioning left ventricle with normal pressures.”

Did I just read what I thought I did? THAT SAYS ITS TRUE! My prayers are answered. My wishes are coming true. 

But wait….Boston is 2959 miles away. I googled that ish!

How am I going to do this?

Let me share another line of the email….

“I see no reason to delay this approach.”

Wait, wait, wait!!!

I was having to accept that surgery was happening way before than I thought, then I was having to accept that no it wasnt happening and the surgery we thought was happening wouldnt happen either, now I have to accept that it is indeed going to happen and its going to be thousands of miles away from home.

Im pregnant. 30 weeks. 10 weeks to go. 

I’m trying to figure out where to go from here.

First things first, I have to make sure that Carson’s medical insurance will cover him having this done in Boston. 

Then I have to figure out when is this surgery going to take place, when is the ideal time. You see Carson has had this hole between his ventricles that was basically so big his ventricles had almost no separation. Now, the hole is starting to get smaller. This changes the anatomy of his heart and eventually can change the pressures, which could potentially make things more difficult. Not only that, did I mention Im pregnant? So when is this going to take place and how the heck am I going to handle having a new born while my oldest is having open heart surgery? 

You know Carson was born via cesarean. Just because I had a cesarean with him does not mean that I have to have one again. However, not all hospitals or OBGYN’s will allow you to have a VBAC or vaginal birth after cesarean. I have had a hell of a time trying to find one that meets my needs and wants. I finally found a place in Los Angeles that allows VBACs however I have had a couple bad experiences. The final straw was a call from the health department saying that Carson and I had been exposed to TB while at one of my appointments. Im sick of fighting my insurance and doctors to find a truly VBAC supportive practice, so I decided to plan a home birth. I believe a womens body was made to do this. Babies are far smarter than we give them credit for and I believe that I can and will do this. One problem is that insurance does not cover homebirth. It’s something I have to pay for out of pocket. I have had half of my tax return put away, that is all the savings I have. Now I cannot justify paying out that much money when I know we are going to Boston. 

I feel like a rock in a hard place. 

Being a parent is about making sacrifices. How do I sacrifice one child over the other? How do I decide the birth I want vs Caron’s needs? How do I plan for something I dont have any answers for?

I dont know how long recovery will be for him, I dont know when surgery will be, I dont know how much money we are going to need to get to and from Boston, how long we will be there, where we will stay, how I will juggle Alison and Carson. I feel like I dont know anything.

I do know that this is the surgery that will give Carson the best quality of life, I do know that I will do whatever it takes to make this happen. I do know that things are in God’s hands. I do know that things will work out just the way they are supposed to. I do know that Alison chose  me, she chose us, she chose this family and she will love her brother through all of this just as much as we will. I do know that I have a super supportive, amazing family. I do know that this paragraph is longer than the I dont knows and I do know that for that I am grateful!

Please pray for us!!! Im sure all my questions will have answers eventually. Thank you everyone for your support and love! I know people want to know how they can help. Thank you! For now I need to make sure insurance will cover the surgery. After that I will share a fundraising page for anyone that wants to help. Thank you again! We love you all!! Your prayers are working, they have been, and they will continue to do so ❤

I’ve Been Avoiding This

Carson had his cath on May 31st. It went well, he handled it really well but the news it gave us is not anything we were expecting.

Ever since Carson was diagnosed all of the doctors would always comment on how lucky he is to have two solid ventricles.  That it was just a matter of time to get him big enough to be able to have his “full repair” that would give him a normal functioning heart.

Once again, Carson is writing his own story, and making his own rules.

He is not a candidate for the “bi-vent” repair that was planned. When they do the bi-vent they put artificial conduit in his heart to create a pulmonary artery, then they would patch his VSD (or hole between his ventricles) and reverse the Glenn. Apparently his original pulmonary artery (which they used to build him an aorta) is not in an ideal place and would make it too difficult and risky to patch his heart how they would need to. Another thing that is against him is that his, prior HUGE VSD is now starting to close on its own and that causes more challenges in doing the Bi-Vent repair. So Carson’s surgeon thinks the Fontan is the best route to go for him.

Here is a lesson in anatomy. Blood from the body (unoxygenated) usually goes to the right side of the heart, out to the lungs (becomes oxygenated) back into the left side of the heart and out through the aorta to the body.

When Carson had his Glenn (his second surgery) they re-routed the blood that drains from above his heart to go straight to the lungs instead. This causes that blood to get 100% oxygenated since it isnt mixing in his heart first. Because babies body proportions are different than adults this works for them for a 2-3 years. Most kids who get Glenn’s get the third surgery in the series of Norwood, Glenn, and then the Fontan. What the Fontan will do is it will take the blood from the lower half of the body and re-route it to the lungs first so that it gets 100% oxygenation before going to the heart.

This is great, we want his oxygen levels as high as possible. However, the heart was not built for these kind of pressures. The left side and right side of the heart are very different. They are created to do very different things. The right side is for low oxygen levels, and the left is for 100% oxygenation. What this means is eventually his heart can grow tired. Eventually he can be placed on a transplant list.

The series of Norwood, Glenn, and Fontan are not that old. The oldest “Fontan patients” are in their 30’s or 40’s. Im not super educated in the Fontan because I never ever thought Carson would have that surgery instead. Its hard to swallow. A bi-vent would give him a normal functioning heart. It would give him a better life expectancy.

This series of surgeries was originally created for kids with the diagnosis of Hypoplastic Left Heart Syndrome or HLHS. Basically this means that a kid diagnosed with HLHS only has half of their heart.

Boston is the #1 Children’s Hospital, they also happen to be the #1 hospital in children’s cardiac care. Boston is taking kids who are born with very small left ventricles and they are rehabilitating them, making them grow, and then they are doing Bi-Vent repairs on these kids, who were only born with half a heart, and giving them a shot at living a full life.

I’ve always fought for Carson and I wont stop. I sent Carson’s information to Boston to get their opinion on his third surgery. I want him to have a fullest life possible. The Fontan is not a death sentence. The Fontan has allowed kids to live normally, and without it many kids would not be here today. I just need to know that the best of the best either thinks the Fontan is best as well, or even better thinks the Bi-Vent is indeed possible.

Being a heart mom means rolling with the punches. I feel like I got sucker punched. But Im back on my feet, and Im coming out swinging. I’m getting more educated, and Ill never give up.

Lessons Learned

Besides the crash course in nursing, cardiology terminology, medical terminology, and overall medical information that I have learned through Carson’s journey he has taught me so so much more. I try really hard to look at the positive, and stay positive. I, like anyone else have my moments of weakness but these are just some of the amazing things I have learned through Carson’s journey:

To never judge: I hate to admit it but I used to be one of those people who would see a toddler walking around with a pacifier in their mouth and think “Geeze, those parents are lazy,” or “Don’t cha think he/she is getting a little big for that thing?” I always thought to myself that when I have children as soon as they are walking the paci goes. Well the truth is Carson looks like a normal one year old, walking around with a huge, ugly, hospital-type paci hanging out of his mouth. However, Carson is not a normal 1 year old. He is a 1 year old who has very few things that are huge comforts to him, his paci being one of them and I will not even consider taking it from him till he is done with surgery and healed.

Be careful what you wish for: We always want our babies to stay babies and so many moms have said “I want him to stay small forever.” I was one of those moms too. Cardiac kids have a hard time gaining weight and its a constant battle to make sure Carson is getting at least enough calories as he burns. That kid is always out of breath, and I am always trying to feed him. He is 17 months old and only weighs 19.5 pounds.

Never give up: This goes for anything in life. But especially for heart parents! We hit many bumps in the road, and most things don’t go as planned. I have learned to roll with the punches and just keep on going. 

Question things: A parents intuition is a strong tool. I have learned to always ask questions. I have a journal I keep with Carson’s information in it, and I write questions in it and take it to his appointments when needed. There never is a dumb question, and the more knowledge you have the more comfortable the situation becomes.

It’s okay to say no: as a parent we have the strongest voice for our children. It is okay to say no. When they tell me Carson needs a specific procedure done I always ask why. I want to know that it really is necessary and if I do not think it is I say no. While in the hospital I sometimes send people away because of the timing. Cardiac kids are hard to draw blood from, I have learned that I can say no, or I can tell them they can only try once.

Set a good example: sometimes I am grateful that my friends and family get to see me through this journey. Never once have any of them tried to tell me “you need to do this with him….” I always research things, and I always try to make the best decisions for Carson and our family. I have friends tell me about their family’s trying to tell them what to do with their children and I am so grateful that my family trusts everything I do with my son. 

Stand your ground: sometimes I have to tell friends and family they cannot come over. It has nothing to do with them and everything to do with my son. At first it was hard. I used to always want to get out of the house. Now I am okay with staying home as long as I know my son is ok. For the next few months we will be staying home, and limiting visitors. My son comes first, period.

Enjoy the little things: I have seen so many babies and children lose their lives to congenital heart defects. It breaks my heart every single time, and it hit home. It always reminds me how fragile my son’s life really is (as if I need a reminder). I always try to enjoy the little things and not rush. When we go grocery shopping I set him down, and hold his hand as we walk into the store. He veers off sometimes and goes to a bush to smell it, or touch its leaves. I let him, we smell the bushes together. I love to see his eyes light up as he explores new things.

You can never have too many pictures: do I even have to explain this?

Co-sleeping rocks: I don’t think there is anything better than being snuggled up to your heart baby as you both sleep. Getting to hear and feel their every breath and just knowing they are ok.

Make up your mind to do something, and do it! when I found out about Carson’s heart I knew things I had planned would change. I knew that I probably wouldnt get to delay his first bath, or have the direct skin-to-skin contact right after he was born. I knew that I was going to be at one hospital and he would be at another. His heart defect would take a lot of things away from me, and most of them were not in my control. However, the one thing that was in my control was breastfeeding. I knew that this journey was not going to take breastfeeding my baby away from me. I set my mind up to do it, no matter what and although it was hard sometimes, I did it and I still feel so accomplished today. He made it to 15 months breastfeeding before he self weaned.

Take things minute by minute, hour by hour, or day by day: sometimes things can be so overwhelming with Carson. I have to be on top of everything. Medication has to be given 5 times a day at specific times and somehow all of them have to be refilled at different times during the month. Sometimes Carson is more blue than normal, sometimes he is fussy and I have no idea why, sometimes things just happen and most of the time I have no control. I have learned to take things minute by minute, hour by hour, and day by day. I try to not get frustrated when he is throwing a fit for no reason, because there are heart moms who would give anything to have those moments with their babies again. Getting overwhelmed is so easy and on days where I feel like I am climbing a never ending mountain I just focus on the small task ahead instead of the big one and that is what I am trying to do today. 

I am so grateful for my son, I am so grateful that he is here, that he is a fighter, that he is hard headed, and that he is MY son and I am HIS mom. I know I will continue to learn and grow. I will continue to have moments of strength and weakness. I will continue to keep on keepin on and I will continue to love my son with every ounce of my being. 

I’m sick of being strong

Can I be weak, just for a moment?

This is the hardest thing I have ever done in my life.

If you haven’t heard on Facebook let me fill you in.

Carson went for his sedated echo on May 15th. He rocked it, and his heart function looks great. His cardiologist was waiting for his surgeon to get back from vacation to talk to her about surgery. She is back and I got the call today that he will have a cath before surgery and then surgery about a month or so after the cath. After I got off the phone with his cardiologist I got a call from the nurse practitioner who deals with caths. We scheduled a date: May 31st….

Thats NOT EVEN TWO WEEKS AWAY!!!!!!!!

Its a minor surgery.

Its scary.

and its one step closer to surgery, one step closer to me having to hand my baby over to the amazing hands of the surgical team.

I thought last time was hard….This time I have had an extra year to get even more attached to this amazing young boy my son is becoming.

How do I do this?

If they could just sign a paper guaranteeing me that he would make it through it would be a little easier.

I just feel like screaming.

I am a single mom now. I am pregnant (which was planned by the way). Although Nick helps out a lot we are not in a partnership anymore.

I have an amazing family, and an amazing support system but all of that doesnt fix my sons heart.

I wish he could be loved better. He has so much love, if he could it would be done by now.

I wish I could go through everything for him.

This is not the way things are supposed to be, Im not ready.

Please pray for him, pray for me, pray for the surgical team, just pray pray pray.

This surgery is a blessing. He wasnt supposed to have this surgery until age two or three because his cardiologist and surgeon didnt think his heart function would be this great this soon. This surgery means that Carson can walk to his Grammy’s house, which is next door by the way, without getting out of breath. This surgery means a better quality of life, a almost normal life. Its just getting through it.