Wednesday, November 12, 2014

Not as planned....not what is wanted...but we will endure

Hayden's annual cardiologist visit didn't go as planned. I usually go in and sit through the EKG, watch his heart in the Echo Cardiogram and anxiously await the words, "it all looks great". 

This year, those words did not come. Instead, I hear the the aorta and pulmonary arteries and valves look great. I breathe a little easier. Then Dr. J does the physical exam and talks to Hayden. There is concern in his voice. He asks Hayden more questions and asks me about his pain and exertion. 

Dr J is concerned. It is down to three different complications with varying degrees of remedies. 

First and most likely, a wire which tied his sternum together has frayed or come undone. It could be poking into his chest or more serious, puncturing his heart and causing damage. If this is the culprit, heart surgery will be done to remove the wire and re-wire the sternum, if necessary. 

The next most likely culprit, is the coronary arteries are damaged. With his latest growth spurt, the coronary arteries could have ripped or torn or become worn out. This would require major open heart surgery. Artery graphs would have to be done and replace the coronary arteries. A week to two week stay in ICU would be followed by another couple of weeks in the hospital. If this option is the one, my poor boy will spend his birthday and possibly Christmas in the hospital. 

The least likely reasons is scar tissue and the pulling of it wrapped around the sternum. This would require pain meds, physical therapy, some other therapies and medications. 

Of course, other info can come up and other complications. But that is the info we have now. 

As we talked to the doctor, he sent us directly to Scottsdale Shea hospital for X-rays. He then sent an order to be hooked to a holster moniter at Mercy Gilbert Hospital. He order stat metabolic stress tests, MRI, CT scans and said from there, he would decide what is next. 

While at the first hospital, I received a call. The metabolic stress test would require us going to Cali or Las Vegas for the test. So he changed to a regular stress test with a pulmonary test and some other tests. He wanted them done stat. With that, the Holter Monitor was cancelled and rescheduled while he is in the hospital. 

November 20th at 8am, Hayden checks in at the heart hospital at Phoenix Children's Hospital. He will have a treadmill stress test with pulmonary tests. They will preform the MRI and other tests while in the hospital. From there, the decisions will be made on where to head next. 

Needless to say, it has been a stressful day. A scary one for Hayden and an unsettling one for me and Thomas. As I walked in the door, my strength granted to me as a tender mercy by my Savior, my body collapsed into a massive seizure. Luckily Julie called and heard the slurring in my words and the overwhelming confusion. She showed up and sat with Hayden while I was unconscious and out of it. 

I am so grateful for my knowledge of my Savior. I know He will carry Hayden and Thomas and I through whatever course this road turns. He is our strength. We trust Him. We love Him. And we know He will guide the doctors and guide their decisions and their actions. We feel His peace and reassurance. We feel His love. 

I will keep the blog updated as to my sweet boy's progress. He is a trooper. He is willingly doing all the things the doctor has asked him to do in the next few days, with running and trying to recreate issues so we can video tape them. They are starting him on exercises that will help in the event that open heart surgery is needed. He will need to stretch and grow. I'm grateful I am homeschooling and we get the chance to take care of schooling around his health issues. Such a blessing and if it is the wire or coronary arteries, it is one that could have possibly saved his life. How blessed are we for inspiration. How blessed are we that our Savior guides and directs. We feel His power and blessings. 


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