Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Saturday, December 8, 2012

Saturday rounds

Our sweet night nurse (former student Kelly Gormley FYI) worked really hard last night to get Lincoln to take a bottle, and as the night went on, he became better and better at it. I must say it was very strange having a former student caring for my baby, but he was in great hands and he even gave her a smile. Lincoln is known for his Mohawk around here, so she instantly smiled when she saw him, excited to care for the Mohawk baby. We really have been blessed with amazing nurses. Yesterday's nurse was our first terrible nurse, (which after twelve days and nights is pretty amazing) and I keep joking they do that so we will want to leave sooner than later.

Murph and I went out to dinner last night after leaving Lincoln snuggled in his bed with his night nurse, taking advantage of what could be the last date night for a long while. We are trying to reconfigure our new life, and had a deep discussion of our fears, hopes, and questions that we need to address. We both feel so blessed to have Lincoln in our family, more now than ever before. While life will be more challenging, we have a great support team at Devos and Forest Hills Pediatrics. We are so thankful that we chose Devos over Motts because we would not have developed personal relationships and such a thorough history together, and we would not have seen the boys for 13 days. I cannot even imagine.

It sounds like checkout is in the distance. We have to get Lincoln's Coumadin levels between 2.5 and 3.5 consistently, and every time they make a change, we don't see a difference for two days. So the change they made yesterday, we won't know how it affects his INR levels until tomorrow. And it currently is at a 1.3. Patience is being forced upon me :) We met with Dr. Mike and Dr. Lacina, our
regular cardiologist, and they both educated us on the uncertainty all of this has in store for us. Lots of doctors appointments, monitoring, and education for those in our lives.

My suggestion of moving Lincoln's potassium vitamin dose has made feedings today so much better! They are trying a different type that will be easier on his stomach. And today is Lincoln's first day without morphine, and he is doing fine. He acts like his an improved version of his old self, and that is the best gift I could have.