Monthly Archives: August 2016

Super Nolan Touches Down at LCH (surgery day)

Early in the morning of June 16th, we woke up Nolan to make the 35-minute drive to Levine Children’s Hospital for his third open-heart surgery, the Fontan Procedure.  I think it took everything within me to get out of bed and just get through the process of loading into the van.  We dressed Nolan in his Super Nolan cape (courtesy of Heart Heroes – THANK YOU!) and mask and he felt super special.  Because, well, he is!


As you can imagine I was a rollercoaster of emotion: basically I kept going back and forth between scared to death and completely confident and calm.  I wasn’t as terrified as I was before his Norwood, and I wasn’t as calm as I was before his Glenn.  It was somewhere in the middle.  I’m sure it had something to do with the length of time between surgeries.  Anyways, we made it to the hospital just fine: we parked and took Super Nolan inside and he walked around like he owned the joint.  He definitely loves some attention.


The team checked us in, validated our parking, and escorted us to the pre-op area, where we would go through the familiar – but not comfortable – process of speaking with the surgical team, the anesthesia team, and nursing team.  We watched TV with Nolan, gave him lots of hugs, and walked around with him looking at all the room numbers.  I really, really didn’t want to let him go…and that became stronger as each second ticked by on the clock.  Finally, Nolan got his loopy meds and the team came to take him back.  They went one way and we went the other way, and I felt a total wreck…probably the biggest mess I’ve been in a long, long time.  Now it was just time to wait in the waiting room…and wait, and wait, and wait.  We knew that a long wait didn’t necessarily mean the surgery was going poorly, but mostly likely meant he had a lot of scar tissue to work through.  Regardless, we received regular updates and I just did my best to occupy the time.

Finally we got the call we had been waiting for: Nolan’s surgery was done and successful.  After a lengthy wait, we got up to see him – it’s hard to see him intubated and on all those med pumps again:


But I was so happy to see some good sat numbers and just to hold his little hand and tell him we were there for him.  Next step?  Get outta here.

I’m Baaaaaack

Hi Friends! Guess who’s back! I’m sure some of you were wondering when on earth I’d be updating the blog. I wanted to let you know that Nolan had his Fontan procedure and after 33 days we got to go home in mid-July. I decided to use that time for all of us to get back into the swing of things. Now that school has started back up and life is chugging along again, I’ve decided to fire up the blog again and let you know how Nolan’s surgery went. Over the next several posts I’ll be telling the story of Nolan’s Fontan procedure and recovery, so stay tuned!
Before I do that, though, I really wanted to thank all my readers for visiting Nolan’s facebook page and leaving kind comments and sending supportive messages there and on this blog. It really meant a lot to have your support behind us, it really made a difference! “Thank you” doesn’t seem like enough, and if I could thank you all in person, I so would. I’m grateful to be part of this supportive community.