After 8 days (and Easter) at PCMC we finally came home. There just was not much that they could do for him there besides try MANY different doses of this new medicine and watch him. His sweet little body did not know what to do with it. Too small of a dose and it did nothing, to high of a dose and it did FAR too much. Days of trial and error and we think we landed on an OK dosage but it must be given every 8 hours.
They approached the idea of a heart transplant (again) but we still don't want to do that, so that's out. They were also thinking about another possible surgery, but they needed to talk with Nick's regular cardiologist, Dr. Cowley, first and get his input and he was un-reachable for about a week. When they did finally consult with Dr. Cowley, he wanted to get another opinion from the Mayo Clinic in Rochester, Minnesota. Long story short, the Mayo felt that doing another open heart surgery would be worthwhile and they suggested trying to remove the entire tumor. Dr. Cowley again consulted with his colleagues and with us and we came to the decision that another surgery would not be out of the question, but that we should do some major information gathering first to see if it was really necessary at this time.
At the end of June we headed back down to Primary Children's Hospital for some tests/information gathering. In one day Nick had an Echocardiogram and EKG, and then a Heart Cath Lab (considered to be major surgery I was told), a CT scan, and an Angiogram. Then 6 hours of recovery and we were discharged.
As it turned out, our Wonderful Dr. Collin Cowley let us know that so far as the tests were showing, Nick is doing amazingly and surprisingly well! Although he has strains on his heart from crazy beating rhythms (bradycardia's and tachycardia's--arrhythmia's) the new medicine that they put him on in March (called Sotalol) is apparently working well. Also, Nick's heart is compensating for whatever reason. (I would say for God's Reasons).
The Lord is SO good to us. And we are so THANKFUL for his mercies upon us and our family!
2 comments:
We are so happy to see Nick's progress, considering the condition of his heart. Dr. Cowley has done all of Brinley's heart caths, we have enjoyed talking to him and giving us a better understanding to the inner workings of the heart. I'm glad to hear the medication is working for Nick and hope this helps him until they find it absolutely a must to do the surgery.
Hugs,
Mike & Family
I usually check out your family blog, so I hadn't seen the latest new look until today. Looks good!
Heart Hugs,
Carolyn
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