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November
18
2020

He’s got rhythm!

Normal sinus rhythm that is! If he inherited his mother’s musical aptitude that’s the only rhythm he’ll have 🤦‍♀️

All tests from his follow up appointment indicate that his heart is functioning 100%. Our cardiologist said repair looks beautiful, his rhythm is back to normal and the remaining fluid around his heart is gone! We have one more follow up appointment in 2 weeks to triple check before we start his long term care plan (3 month post op, then once per year).

We couldn’t be happier or more relieved. The thought of another surgery right now was really hard for us to fathom. Thank you again for all the love and support. It’s been a wild journey this past month especially with COVID stress on top and although we haven’t been able to see each other physically, we feel the connection, support and love from you all.

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November
2
2020

Glimpse of hope!

Just wanted to let everyone know Johnny is recovering incredibly well at home. We are amazed by the strength of this little warrior! We weren’t sure what to expect with his movement post surgery and he is scooting around at the same pace as he was before surgery. 

But the best news is we got an early glimpse that his rhythm might be returning back to normal, which would mean he would not need a pacemaker. We don’t want to get too excited until after his two week monitoring study is over but last Friday at his post op appointment, it was normal during the 2 mins of his EKG! We were shocked to say the least as the doctors made it very clear that it was unlikely after 7+ days... but Johnny is pretty good at defying the odds so I’m hopeful he did it again!

Since you are all doing so well praying and sending positive healing vibes, we need you to keep it up just a bit longer! Again thank you for all the support this past month. It truly made this easier hearing your words of hope and encouragement. We are so lucky to have such great family and friends along this journey with us ❤️

October
27
2020

Jailbreak

Ok, that’s a bit dishonest. They let us leave. But after being told we could leave yesterday with bags packed and told last minute we had to stay another day, once we were given the green light today, we didn’t look back.

Unfortunately Johnny’s not completely out of the woods yet. He still has what’s called junctional rhythm. If you’re curious, google it. There’s also a fair amount of YouTube videos, but for Johnny, it really boils down to three scenarios:

1.) He jumps back into a normal rhythm over the next two weeks. He’s wearing a monitor that will track all activity during that time.

2.) His rhythm doesn’t come back and will require a pacemaker in the near term (next few weeks or months)

3.) His rhythm doesn’t come back but he’s able to tolerate physical activity without any distress until potentially later in life. A pacer would then likely be implanted down the line (next 5-10 years).

The longer he’s in a junctional rhythm, the less likely it will revert back to normal so while we’re hopeful he snaps out of it, we’re also educating ourselves as to what it would mean if he doesn’t. Either way, we’re going to be fine. Johnny’s going to be fine. He’s a tough, patient, and no matter what happens, an incredibly smiley and happy dude which are all things to of course be grateful for.

October
25
2020

Promoted out of ICU

Johnny got a promotion! Now on a standard floor. Still has the "junctional rhythm" but he hasn't been on the pacemaker for over 24 hrs and is doing fine so they're going to see if he snaps out of it over the next few days and if not, are contemplating sending us home and monitoring it virtually. In other words, not serious enough to require ongoing inpatient stay so trending towards Monday at this point. Cross your fingers (and toes)!

October
24
2020

Patience and progress

Johnny had a great day today. He was either up and playing or sleeping. We got him on the ground to play a couple times and he loved having that freedom, even tried to scoot around as far as his cords would allow. Not much changed with his rhythm yet. They took him off the pacemaker today to observe and he’s still has what they call a junctional rhythm, caused by inflammation. They want to try Ibuprofen tomorrow to see if that will help. So we are just patiently waiting but otherwise he is doing awesome.

And no surprise that he has all the nurses and doctors  loving on him. This morning he had a group of at least 10 nurses standing outside his room swooning over how cute he is for 15 minutes. I am not sure they are going to let us leave :) 

October
22
2020

Making steady progress

Hey hey,

Johnny is still doing great and making steady progress. Starting to act a lot more like himself. Yesterday was a pretty rough day reacting to the meds so that was a bit touch and go and stressful but we are hopeful we are thru that as he isn’t on any narcotics anymore. They took his chest drainage tubes out and the IV that was preventing him from getting to his favorite thumb :) he is now sitting up, playing and getting back to his joyful self. The only thing we are still watching closely is the rhythm of his heart. They started him on a pacemaker yesterday to help with this. Doctors say this is very common the first 48-72 hours post surgery due to inflammation. So other than that, that is the last hurdle to get thru to move out of the CVICU and onto a regular floor. We will keep you posted on this progress but it really was a day of great progress... and a lot less tubes/cords! We even felt comfortable enough to let Grace FaceTime with him this afternoon which was fun. They have such a special bond.

Ross and I are doing just fine. He went home to sleep last night and I went home for a nap and shower today, which felt like a vacation.

Thank you for all the love! More to come tomorrow.

October
21
2020

Doing Well in the CVICU

Quick update on Johnny man: he made it through the toughest part and is progressing well. He’s still pretty sedated and is comfortable for the most part but there’s still a lot going on so the more lines and tubes we can take out over the next 24-48 hours, the more comfortable he’s going to be. 

Won’t bog everyone down with details but if things continue to trend well, we’ll move out of the CVICU tomorrow into a regular recovery room.

Will send another update tomorrow or if anything changes before.

Thanks,

Ross and Kate

October
21
2020

Successful surgery!

Great news! We’ve heard the surgery was successful and they are closing him up! Everything went as planned. Still be over an hour before we see him and a long night ahead but we are so thankful ❤️ I will wait until tomorrow until our next update. Thank you again for all the loving words and thoughts today, it means so much to us.