Keeping The Pace

What a longish day!
Prior to surgery

Off he goes

One of the bravest boys I know!  I couldn't do this knowing I would be awake! 

This is a picture of Sam's defective heart and where they were going to place both wires and where they would access the the two lower chamber and the junction in the middle where more issues reside

Post Op

Lucky number 60! More than doubling Sam's heart rate! 

One overwhelmed young man but better than ever.

A view from Sam's room.  


Everything with Sam's pace maker surgery has gone so well; such a tender mercy.  Our doctor has been so amazing and his Fellow was outstanding.  They spent so much time prior to surgery educating Sam on what is wrong with his heart.  They even drew pictures to help him understand the procedure.

When we first checked in, the nurse told me that Sam would in fact be under general anesthesia and I felt like a ton of worry had been lifted.  All along,we were told he would be awake.  That amazing feeling lasted all of 20 minutes until Anesthesia came in and said, "No, I don't feel comfortable putting him under with the condition of his lungs and liver."

Ugh...so awake he was.  We came here just planning on a one lead, pace maker.  They determined that because of his Right bundle branch block they needed to place two wires in his heart.  One in the upper right atrium and one in the lower right atrium.  They also needed to access the lower parts of his heart so they decided to do a second procedure and enter the main artery in his groin.  That procedure was to get a better look at why his heart isn't initiating a beat and to get more precise measurements of each ventricle, left chamber, junction nodes etc.

I am so thankful that they didn't run into any complications with his Arterior Venous Malformations or lung problems. No excessive bleeding. His biggest risk at this point is infection.  He has no immunity left so they are running IV antibiotics tonight and tomorrow.  As soon as he gets healed from this, we will head back to Immunology and start on immune therapy to keep him in better health this winter...finger's crossed.

When they brought Sam back to the recovery room and hooked him back up to all his heart leads the monitor started beeping out a rhythm that sounded so beautiful and glorious!  A beat of 60.  Steady, solid 60 beats per minute!  I couldn't even speak!

 I just started crying. The doctor looked at me funny and I said, "It's such a steady, amazing number!  My new favorite number!"  He smiled and said, "Yes!  It is.  I guess that you have missed that."  I had never thought how much I have missed seeing that number on any of my kids.  It's the number of life!  It's the number that infused me with hope!

Sam has been on strict bed rest all afternoon.  He has had to have his arm restrained because he can't move it above his elbow for 4-8 weeks.  They also needed him flat until the aorta at the groin site had clotted off and was not bleeding.  That took all afternoon.  He's been up walking and guess what...not dizzy!  Not out of breath!  Not like an 80 year old!  He's my boy, my 19 year old boy with a normal, albeit computerized heartbeat.

I am amazed!  I am amazed at God and I am amazed at science and I am amazed at our skilled team of cardiologists.  We are truly blessed.

Sam had a panic attack during the procedure and hyperventilated so that was traumatic for him.  When I kissed him in the recovery room, I said, "Listen to your heartbeat Sam!  It's normal!" He got pretty emotional and his lips quivered but he was afraid to cry, just looked shocked and panicked.  He is overwhelmed.  It's been a rough day with everything he has witnessed and been through but we will work through that.

Thank you for so many prayers and warm thoughts. Sam was able to have a blessing from his brother and cousin before we left and all of his friends serving missions have been praying for him and that has given him so much strength to feel all that love.  He has the greatest friends!

Tomorrow, I will be trained on how to care for things from here on out.  I'm still so overwhelmed with what we have been through this year and what lies ahead even still.  I mostly did okay today but it took every ounce of energy I had to stay in a place of hope and faith.  At 11:33 this morning, I was hit with the most profound feeling that I needed to pray at that very minute.  At the same time, I felt extremely panicked but I sat on the edge of my chair and prayed, then waited for a nurse to come through the door to tell me Sam had coded...they didn't and I'm sure now that he didn't and since I was crying when the doctor came out to let me know things went well, I forgot to ask what happened at 11:33.

Whatever that was about...it's okay now.  I know we will have some trauma to work through once the adrenaline tide retreats and all of this will hit me hard, like it always does when the dust settles.

PS...It's been really hard to find any literature on heart conditions and Dyskeratosis Congenita.  All the doctors say...Nope...not related.  In my mom of mom hearts, I am having a hard time jumping on their bandwagon.  I was shocked to pieces when the Fellow came in and told me that he did find one Journal article describing a similar situation in a DC patient.  I asked him to print me a copy and I hope he remembers.  I also asked if he and Dr. F would be willing to write up a case article on Sam so that it is at least documented that a boy with DC has conduction heart issues as well as cardiac AVM's.

It was priceless to see the look on the Fellow's face when I asked him for that favor!  It was like a kid at Christmastime.  I love having doctors who love the opportunity to learn.  He was almost giddy which made me smile.  I actually wanted to hug him but refrained...Ha ha.
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