Out with the Old

 

Its been a really long time since I've blogged about Cameron and our life. I guess there have been times when I wished I had kept up with blogging, but for the most part life has been(wonderfully) routine and aside from the life of a mom with a special needs child, I have been pleasantly surprised at how life has just become "normal."  Yea, sure, there are still the specialists appointments that we have to go to, and the extra precautions and steps we take when Cameron gets sick, but for the most part we have been incredibly blessed with a good run of happy and healthy. That is until now.

Back in July, at Cams routine 6 month check up with his cardiologist in Boston we learned that Cameron's sub aortic stenosis was a little worse. Nothing concerning, yet, but still on a trajectory that suggested another open heart surgery would be in Cameron's future. In November of 2011 Cameron had his first open heart surgery to repair the stenosis in hopes that it would resolve the issue. The surgery was terrifying for me, and I had a really hard time emotionally stabilizing myself to hand my precious 14 month old over to strangers who would then open his chest. But on November 10th I did just that. I handed him over and prayed for the Lord to keep him safe. Four hours later, the surgery was over and not long after that I was reunited with my sweet boy. He recovered very well, and five days later we were out of the hospital in hopes that this surgery would be the last as far as his heart was concerned. Unfortunately that brings us to now. And another OPEN HEART SURGERY.

A couple weeks ago we went for Cams 3 month echo that he has done here in NC, to make sure we were still stable. It showed that the stenosis had increased even more. It was a trivial increase, but it suggested that this is how it's going to continue and we are running out of room to allow it to increase anymore. Our Cardiologist here and I spoke for about an hour on what this meant, and that it was probably time to start thinking about surgery........and somewhat soon. 

Sometimes life has a funny way of hardening us. I'm not saying that my heart didn't break when the reality of another heart surgery was spoken out loud, but I just sat there. I wasn't sobbing, and stuttering my words. I wasn't asking questions that had no answers, I was just sitting there. I asked calm questions. I asked practical questions, and I kept myself together. It was a surreal moment. It was like my "real" self, the one that wanted to scream and grab Cam and run far away was above this other self that was sitting there, quiet and calm. I can't explain it any other way then that I am a different person. This was something I felt I knew was coming and I think the Lord has been preparing me for this news for awhile now. It's also the cruel, harsh reality that parents like myself face more often than ever desired. Children like Cameron are road maps for their journeys. Their scars mark them for everyone to see that they are no stranger to an operating room. I think his scars are magnificent testaments to how strong and brave he is, but they are also reminders to me of how weak and fragile I am when it comes to putting my sweet boy through yet another surgery.

Cameron's Open Heart Surgery has been scheduled for Monday, December 8th. Before his actual surgery we will need to be in Boston December 3rd for pre op for a catheter procedure that he will undergo on December 4th to hopefully get rid of a passageway that creates the SVT that causes his heart to beat so fast. If the electro physiologist can safely access the area then he will essentially zap it and that should stop his issues. However if the area is located near a sensitive part of the heart, then the cardiologist has informed us that the risk would be too high to fix it before Cams surgery. So in that case they will just leave it, and still proceed with surgery on Monday. The scary part is that if they are not able to fix the SVT during the Cath, then the chances of Cameron's heart having issues during and after surgery are increased. This could mean longer healing time and possibly a harder time managing him post operatively. All I know is that I'm praying for their ability to successfully ablate his SVT during this cath procedure. Please join me in saying that same prayer as well.

Cameron has no idea that he is facing another Heart Surgery. He is beautifully unaware. He will know something is up when we get to Boston for pre-op appointments, and he will be scared and fearful then, but for now, he is just happy and unaware. I on the other hand am constantly finding myself nauseous and full of fears. I know what my child is facing and when I allow myself to think about it for any period of time I start suffocating. We travel to Boston because it is the best in the world for this kind of stuff, and more specifically for kids like Cam. But even at the best place in the world things don't always go as planned, and when I allow that thought to creep through into my mind I come inches away from grabbing Cameron, and running away to someplace where this doesn't have to be faced. But the truth of it all is that it has to be faced. If Cameron doesn't have this surgery then his precious little heart will start failing. His precious body wont be able to sustain his efforts to play with trains and dump trucks, and he won't be able to run and play. Not a life I would want for my sweet boy that is so full of sunshine.

I cry. A lot. Not in front of anyone, not even my husband. I cry alone. I cry in the shower so no one can hear. I cry when I'm doing laundry and the boys are napping. I cry when I'm driving to Walmart to get groceries. I cry and I pray. I pray because God has got this. He is in control. He is the one that is calling the shots in this life, and I want him to know how very angry I am at him for putting my sweet boy through this again. I want him to know how scared and worried I am. I want him to understand how much I hate him for putting my family through this. I also pray to tell him how much I love him. How much I am grateful for. How much I need him to show me mercy and peace. I pray for a miracle, but mostly I pray that he will use this for his glory and that he will bring my sweet boy through this surgery successfully and healthy. I pray for him to help me and give me the strength to get myself out of bed everyday so that I can take care of my family. I pray that he is gracious and loving and that this will all be ok. I pray and I cry.

We will be leaving December 1st to make the drive to Boston. We are driving because after heart surgery it's not very safe for Cam to fly, so we get to make the 14 hour trek by car. With a four year old and a two year old, please pray for our sanity, haha!! We will drive half way then stay in a hotel and then the next morning we will drive the remainder. December 3rd will start our journey and December 8th we will hand our sweet precious boy over for another open heart surgery. They estimate that a hospital stay of 7-10 days is average and then we will have to stay in town a couple of days until his follow up. So in total we are looking at spending the majority of December in Boston. It is what it is. But it still sucks! Starting today we will be selling t-shirts that read "Warriors 4 Cam". Not only will this help us with expenses for this trip, but I also want those that purchase a shirt to wear them on the day of Cams surgery. During his first Open Heart this exact thing occurred and it really made me feel less helpless knowing that so many people were praying for Cam! The t-shirts will be available to order online and once the fundraiser is over, the shirts will ship out and be received within two weeks. We are planning on running it for two weeks so that everyone will be able to receive their shirts by the end of November, and more importantly so that they will have them for surgery day.

I am so proud every day that I get to be Cameron's mom. I am so amazed at the obstacles he has overcome, and at how he perseveres in spite of his limitations. He has been through more in his tiny little life than most, and yet he continues to smile and shine this beautiful light that makes you fall in love with him every time you see him. He is a WARRIOR. Please join me in praying for our family. Please pray that this time before surgery that Cameron stays well. Please pray for mine and Paul's hearts. We are scared and so sad for our little boy, and we would covet your prayers for peace. Please pray for this surgery to be a success and for this to be the last heart surgery he will ever need! We are so grateful to all of you that pray for and love our boy. We are grateful for everyone that has helped us along this journey, whether that be financially, spiritually, physically, or

emotionally. We love you all. Thank you for your continued support and love. We will continue to keep everyone updated on this journey and if you have any questions.......please don't hesitate to ask!

Love,
Paul, Jess, Cam, and Max!