Just over 2 years ago I wrote a blog post titled "Watching God Step In" after an appointment at Duke Medical Center with Kayleigh. It was our very first appointment with a cardiologist and we didn't know what to expect, but we went in praying that something would happen to finally figure out what was wrong with our daughter. What a day that was. I won't rewrite the whole post, you can read it yourself, but I will say it all started with a very young doctor who was just a "fellow" at the time, learning the ropes of pediatric cardiology who recognized something was very wrong and managed to get her seen by echo that day, have a stress test, and see a special cardiologist. This all led to her finally being diagnosed and got us on the road to her recovery. That fellows name... Dr. McCanta.
Over the last year and a half, Kayleigh has continued to improve every day. She is stronger, eating better, gaining weight, running daily, and happier than we've ever seen her. She continued to go to Duke for follow up after the "big scare" in the summer of 2011, and continues to just wow us all. When we decided to move to Arizona she decided it was time to move out on her own... and move to Colorado! I have been worried about her, but her Daddy said she's doing fine, getting better, let her go.....". So.... we did. GULP!
Last week we traveled to Colorado to get her care established with a new cardiologist at Denver Children's Hospital and Pediatric Cardiology. In the days before the appointment I started to worry (yeahhhh I know.... I gotta stop that!). The biggest concern we had for her health was that she was feeling strong heart palpitations when she would be at work, on her feet, active, etc. Normal for most of us, but for someone like her... when it gets worse and stronger it can be worrisome. And you know how some new doctors are.... they want to do their own thing, switch meds around, change doses, etc. etc. etc. and for the most part she was doing well so we didn't want any of that touched. We just figured her meds needed "tweeked" a bit b/c she's gained weight and went to such a high altitude.
Well imagine the relief we had when the doctor who walked in the room was THE Dr. McCanta from Duke Medical Center (on the opposite side of the country!!!).... 2 years prior! THAT is absolutely God reassuring us that all was going to be JUST fine! The appointment was LONG. No.... the appointment was EXCRUCIATINGLY LONG! But the outcome.... was nothing short of a miracle!
They explained to us that the stronger heart palpitations she was feeling is because her blood pressures and pulses are pretty much NORMAL without medication, indicating the muscles in the left ventricle of her heart are actually getting STRONGER. This, my friends, is awesome news! So what's happening is her heart is beating well on it's own, plus she's taking medication to help it along still, and then when she's active her heart is actually beating TOO strongly... thus more palpitations!
So, the plan from here is that she will start a 30 day constant heart monitor that's attached to a cell phone type device constantly communicating with her cardiologist office for them to see/read at all times. She can hit a button on it when she feels "funny" and they will be notified immediately and able to read it remotely. (So cool!). At the end of the 30 days (which isn't going to start until the week of July 20th), if all looks good, they will start to wean her off some of her heart medications!!! Dr. McCanta did explain that that this is not an overnight thing. He will do it one pill one dose at a time and the plan is to get her off all, or as many as possible, over about an 18 month to 2 year time frame.
We are more than elated at the news we received and are so very thankful for ALL of the people who have prayed with us over the last several years through her illness, who brought us meals, who wiped our tears, who held our hands, who led us to stay steadfast, who helped us remain faithful in God's plan. And here we are nearing what we pray will be the end of this long road for her with God bringing it full circle... to that young fellow cardiologist who recognized the rare disease that had been taking Kayleigh's life away so that we can personally say thank you to him at the end of this road!
