Lincoln is in some pain; with every grimace, I grimace. We took some pain meds off and added some Morphine and Tylenol.  The last chest x Ray shows he has a small pneumothorax. We’ll repeat that tonight. The last time one of those pneumo’s bared it’s evil head we got into trouble; I hope he behaves himself this time around. We increased the flow of … Continue reading Day 8

Welp, my little baby WAS in SVT all this time. The doctor set his pace maker to 300 bpm, cranked him up and got him out of it. I was so relieved and terrified. I can’t believe how much we’ve stopped and restarted this kids heart in the past few days. It’s not normal that I am I getting used to this. Through the night … Continue reading Day-7

Extubation day. Lincoln’s puffy today. He’s swollen around his eyes and he was fighting his ETT tube. It’s hard to watch. During rounds there was debate whether they should extubate today or tomorrow because of the puffiness. They gave him steroids incase there was any edema at his airway. This is the point where knowing too much stinks. I am aware of the challenges that … Continue reading Day 6

As expected, recovery is rough. Lincoln has had a fever for a while now and his heart rate has been between 180-190. Infectious disease visited and feels the fever is just a reaction from  surgery. As for the increased heart rate, they aren’t sure if this is SVT or just an increased HR. EP was consulted. In the mean time they tried meds to slow … Continue reading Day-5

This morning at 7:30am we dropped my sweet baby boy off at the OR from the PICU. He wasn’t asleep, or already knocked out, so he was very aware that we weren’t rolling back there with him. He was crying real tears – which is rare for Lincoln. Even knowing he’s in the best hands possible, it cuts like a knife seeing this. He isn’t going … Continue reading Day 4- Surgery Day

I don’t want to be negative or dramatic, it is hard enough without either of those things. Lincoln’s first on the schedule for the OR tomorrow. The plan is to get the Glen without the Cone, that’s right, without the Cone. His valve isn’t going to allow for a Cone and I need to move on from that. Our next option is to use CorMatrix … Continue reading Day 3

Today was long! 10 hours of pre-op testing. Lincoln smiled at the docs and slept through his echo in true LP fashion. We found out Lincoln will be admitted to the hospital tomorrow so they can monitor his blood sugars closely before surgery (Lincoln has hyperinsulism which causes him to have low blood sugars). Tonight is our last night all together at the Marriott. It’s … Continue reading Day 2

It’s hard to prepare for stuff like this. Even with all of my lists and army of help I don’t feel ready. Yesterday was a long day of travel. We laughed, we cried, we made flights we missed flights, but ultimately we’ve made our destination. So many people asked me yesterday why I didn’t stay at CHOP for surgery and I started to ask myself … Continue reading Day 1

Scott and I are headed out to Rochester, Mn on Tuesday June 23rd for Lincoln’s first open heart surgery. Instead of filling everyone’s Facebook timeline with Lincoln updates, I figured I could use this platform. Everyone’s prayers, positive energy, donations and thoughts are appreciated more than I could ever describe. Here we go ! Continue reading Here we go.