Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Tuesday, May 28, 2013

Some good news

Since January, the doctors have been warning us of a possibility of Lincoln needing a repair surgery if an area surrounding the aorta narrowed (a common complication I guess from Linc's surgeries and mitral valve replacement). We have been nervously awaiting today's echo ultrasound because of that narrowing, and to be honest, we've never had an appointment where we've walked away with good news. 

And it has been a rough month. Lincoln's INR has been completely erratic, and he has been refusing to take his meds (spitting them out or shutting his mouth). We tried sprays, pacifier medicine droppers, an elephant that makes noise, and three people holding him down. Nothing was working. Jodie, Lincoln's nurse suggested mixing it with food. We finally figured out that mixing it in applesauce works much better, and so far, as long as he doesn't see us mixing it, he is fine about it. We have also upped his dosage again, because this boy loves his veggies like his mommy! We would rather have him eating more veggies and more Warfarin than less veggies and less Warfarin. As of Sunday, he was finally in a therapeutic level, the first time since the beginning of May. Once again, we ride the Warfarin roller coaster. We also had to switch from heel pokes to finger pokes with our INR machine as the heel pokes were getting to be too difficult to draw blood. So, again, we are learning and trying to work together as a team. Starting all over, but Lincoln's bravery and strength makes it so much easier. He is such a trooper. 

So, today, I was a nervous mommy. Who am I joking- I have been nervous since January. As John Green writes in his book, Fault in Our Stars, "Don't worry. Worry is useless. I worried anyway." That is my life. Lincoln couldn't eat any solids after midnight, and any breast milk after ten a.m. The staff at Big Steps Little Feet were AMAZING and took wonderful care of my sweet boy today, giving him extra love and care since he was hungry and crabby. They had to sedate him for the Echo ultrasound, and it went really well. Dr. Joseph was there to do the first 3-D ultrasound on Lincoln's special heart. I was so nervous during the appointment because they point, discuss, and whisper in a language I don't understand. Lincoln looked so peaceful during it, which was nice to see. It was his first time sedated for it, and while it was stressful to prepare for it, he used to get so restless and frustrated during the ultrasounds. It was much less stressful for everyone once he could rest peacefully and the doctors and tech could focus on his heart. 

We finally got to hear his heart. Watching it on the screen and listening to his heart beat, I choked up. Dr. Mike always says Lincoln's heart sounds like the clomping of horse hooves on Mackinaw Island. And it does! It is a strong, unique sound that I have never heard before. And today, it was the best sound I have ever heard because it is functioning properly and strongly. Dr. Joseph said he has to review his 3-D images more closely, but that his heart looks great, and he should be fine until he is eight to ten years old (when he will need his mitral valve replaced again) A.M.A.Z.I.N.G. speechless. Utterly thankful and shocked. Blessed. 

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