The Day Of Surgery

12:30 pm

Kilian headed down to the OR about 30 minutes ago. With the repair of his heart the surgery from start to finish they estimated will be about 9 hours.

Yesterday was so full of uncertainties. They took him away with so much chaos, no one knew what was going on, and his surgeon seemed rattled. Today was the complete opposite. Cool, calm and collected. The surgeon spoke with us after Kilian was successfully transported to the OR and you could tell his confidence was regained. Good vibes only.

I whispered so many sweet nothings into Kilians ear and sent him off with a hundred kisses.

"You've got this Bub. I believe in you. Let's prove them all wrong. We'll be here for you when you get back."

1:10 pm

Kilian has been in the OR for just over an hour. There is a dedicated nurse in on the surgery that will about every hour come to us and give us an update on how he's doing. About an hour ago I was full of confidence. The vibes were good, it all just felt right. And I thought ok, he's going to do this. He's going to make it thru surgery, and the hurdles he will face thru recovery can be focused on then. But now, all of that optimism has disappeared, and replaced with this single vision - the nurse coming to us and beginning with, "I'm so sorry."

And because this whole experience is shaping up to be a screenwrite for a movie, the nurse just walked in as I finished trying that - deep breaths.

Transport went great, they did another broncoscopy to have a last look and finalize everything, he is stable and the next step is to put him on bypass. She will come to update us once that step is complete. Today is really going to test my ticker...guess it's a good thing we're in the cardiac unit.

I wish I could get that vision out of my mind. It just plays over and over, and I'm so afraid of what it's going to feel like to hear those words. I'm trying to distract myself with watching the construction going on outside. It works for a bit, until I hear footsteps outside the room. My heart stops everytime.

2:30 pm

The nurse came in and I was so relieved when I saw her face, she looked so happy. Kilian was successfully put on bypass, no issues and still doing great. She said they were taking a moment to 'admire' his anatomy and then would be getting started.

3:19 pm

Almost done with the Tracheoplasty, still doing really well. Starting to cool his body temperature down in preparation for his heart repair. First his pulmonary vein, then the artery. Or something with his aorta..I'm not sure to be honest.

His heart is the one anomaly/part of anatomy that I haven't really researched. From the very beginning there wasn't a lot going on with it, and it never really seemed to be an issue. At one point, because of his pulmonary hypertension, the right side was enlarged. But everytime I spoke with a cardiologist it seemed to improve, and they were always happy with it. Beyond the dextrocardia, the only real finding was that he was missing a pulmonary vein. But the lists of issues some of these babes have with their hearts are astounding, and that was the one thing Kilian wasn't facing. So gaining any knowledge on the heart was the last thing on my mind. After his CT scan yesterday, they revisited all of the prior echos and noticed a trend..the vein was narrowing little by little. It was something they couldn't ignore, and to give him the best chance, his heart needed the repair. And it needed it now.

4:01 pm

Been trying to keep busy in between the updates. Went and ate. Brought some boob milk up to the Milk Kitchen. Decided we would sit in every chair we found. Knocked on every piece of wood we passed. Admired the exit signs. Counted burnt out lights. May count ceiling tiles next.

Little friends. I couldn't remember what the cardiologist called Kilian during a consult, but I remembered it was so endearing. We just overheard one of the respirator therapists say 'little friend'. That was it. These people are so incredibly sweet and kind.

I thought I would write some posts for Kilians blog while we waited. And while time seems to be going slow, it's also speeding by. This is such an adrenaline rush..one hour down, four hours down..almost halfway thru. This all feels so surreal. I can't believe we're here. I can't believe this is the road we're walking on. I just want to hold my little monkey and tell him it'll all be ok. I just want it all to be okay.

4:30 pm

Tracheoplasty done. Pulmonary artery done, starting on his pulmonary vein. Switched the order of those two because that's what was going to work best. Broncoscopy verified that the reconstruction of his airway looks good, nice and open she said. Will start to bring his temp back up after the vein is done. They decided they are going to leave his chest open to allow plenty of room for the swelling/inflammation of his heart, taking no chances.

Can't count the ceiling tiles in his room, determined the room is on an angle so the unevenness of the tiles is making my OCD unhappy. Going to stare at the inside of my eyelids instead.

5:04 pm

'For Fox Sake Kilian' is my shoe (is that right?) in for the real monkey. The wrong person is going to hear me talking to this stuffed animal and hold my hand on the way to Behavioral Health. Or is it psych? Is that politically correct?

5:10 pm

It was so sunny and beautiful out this morning. Now it's gloomy and looks like it's going to rain. Trying to shake the feeling that it's a sign.

Told Kevin before that at some point I'm going to unintentionally yell SHUT UP to my brain outloud.

5:19 pm

Procedures are done. He's still stable and doing good. They're starting to bring his body temperature back up and will work on taking him off bypass next. She said it may be a few hours depending on how his body responds. King Kilian is almost off of this mountain and on to the next.

Went outside to grab snacks from the car and FaceTimed Amelia. Took her on an elevator ride and showed her the parking ramp, hospital, pointed out where Kilians room was. Miss her..haven't seen her since Sunday. Wish I could hug her right about now.

Met our second friend on the way up to the CICU. First had a 7 year old son who had spent 100 days in the CICU, now waiting on a transplant. "It gets easier" he said. The second with a 3 month old who just got out of open heart surgery today, and was doing well.

"I'm sure we'll see you again this week. Good luck."

"You too.."

Everyone grasping for conversation with someone who understands, attempts to settle nervous thoughts.

6:04 pm

For Fox Sake Kilian just chilling in the window. I really hope I see the day Kilian snuggles with it. Will probably be his least favorite stuffed animal. Or him and Amelia will fight over it. I really hope she gets to meet him. I really hope they get to fight over toys.

I wonder what we're going to do tonight...possibly head home. Kevin wants to spend tommorow with Amelia, come back to Kilian on Thursday. I can't decide what I want to do. On one hand I don't want to leave Kilians side. On the other - there's nothing I can do for him. He won't be awake... And if I'm being completely honest...it's scary here when he's in rough shape. I've already watched him code twice..don't know how many times I can handle. How unfair is that to him, for me to choose not to be here for him because it's hard for me. This is all so effing hard.

6:11 pm

What if he doesn't wake up? What if they can't get him off bypass? What if they can't stabilize him after? What if his heart doesn't start beating? The what if's are drowning me.

I wonder what those other two guys we met are thinking. Doing. What are their what if's?

My face feels greasy, all the stress of the day. I look like I was hit by a bus. I just want to shower and wash this day away.

6:15 pm

We need shampoo. Maybe I'll stay home tommorow, and go to the store. Do we need anything else? I can't even remember what's at home besides an empty fridge. I should go to the store.

6:40 pm

He's been off of bypass for about 15 minutes, just working on getting everything stabilized - totally normal she said. May take a bit but still so far so good.

She asked what we were going to do tonight..we can definitely stay in his room but it'll be a busy night. We told her we kind of were thinking about going home to Amelia..she said tonight would be a good night to do that. Thinking that's the game plan. I miss our bed.

7:50 pm

Having trouble with ventilation off of bypass. We expected this. He may have to be put on ECMO. Also expected. They want to try to make the pulmonary artery a little bigger yet and see if that helps, really wanting to avoid ECMO if at all possible.

Ran into our first friend while in the family lounge waiting on another update. Discovered his son has Heterotaxy, which is originally what they thought Kilian had. Supposedly such a rare thing and here he is from the area. What is happening to all of our kids?

What time is it PM

The widening of the artery did not help, and they're thinking its his pulmonary hypertension causing the issue with ventilation. He will unfortunately have to be put on ECMO. All things considering, we will take it. Hopefully he doesn't have to stay on it for too long and we don't run into damaging effects. At the moment they are working on transferring him from bypass onto ECMO, cleaning him up, and getting him ready to transport back to the CICU. We'll be able to take a peak at him in passing, and then it'll take about another hour to get him stabilized in his room. At that point we're allowed back in to see him.

9:43 pm

Just heard one of the physicians saying something about not wanting to 'piss him off'..speaking about a patient and not wanting to give something a nurse wanted to give. Idk maybe you had to be there but Kevin and I just about lost it. We love unprofessionalism. Feels good to laugh. Don't know why but I feel just as nervous now as I did this morning.

10:30 pm

The nurse just walked in. I was laying on the couch, and jumped up like a damn Jack in the box. My nerves are just shot. She immediately said everything is ok..think I startled her as much as I did myself. They're almost done getting him ready to come up, about half an hour she said. Then we'll be able to see him for a moment before they get him set up in his room. I just looked at my face in the mirror and all my makeup that was hiding the bags under my eyes is gone. Hot. Mess.

There will be 2 nurses in Kilians room tonight, one tending to him, and one manning the machines. That's such a crazy thought to me..that there's a dedicated nurse for the machines. Machines keeping him alive.

Breathe.

10:13 pm

A nurse just came in and said we'll notice a bunch of nurses outside his room in just a bit. They'll be going over worse case scenario procedures for if Kilian codes tonight. Just in case. After last week, I'm now preparing myself for this to happen, and for that phone call.

10:26 pm

The surgeon just came to talk to us. I know what he said, I don't know how to repeat it. He looked absolutely exhausted. He talked about the vein, and the artery..how small they were, hoping something would grow with him..ECMO, how challenging it was..it's all starting to blurr. He also said that his heart was actually functioning really well, he seemed so happy with this. We wanted to offer him the couch to lay down for minute..

10:44 pm

We just got to see him in passing on his way to his room. He didn't look as bad as I expected, he wasn't pale. In fact his color looked so good. There was something on his face tho..I don't even know what. I couldn't focus on it, they had his face covered with a blanket when they walked up and it so threw me that when they took it off I had to kind of..I don't know, reset? I can't think anymore. Kevin said it was blood. They were still trying to get his bleeding under control, no reason for concern yet just something they hope to accomplish in the next few hours, so he's getting a lot of blood products in the meantime. Kevin said from throwing gauze around...it's making sense now. I can picture them in his chest, the instruments being used, the gauze..

They made an announcement over the speaker in the CICU that he was headed up. The production this all is, blows my mind. We're so far from being out of the woods. So far. But he's still ok. We're still ok.

Calling it quits on this post - my brain is just done. This was fun and let's never do it again. Going to patiently wait to go sit with him for a bit before we head home, and pray that we don't get that phone call. Let him rest, let the nurses and doctors do their jobs, and hope he can hang on. We're not even off this mountain yet and already climbing the next.

Oh Bub, I can only imagine the pain you're in. I am so incredibly proud of you. Your strength amazes me and I can't wait for the day I get to tell you your story. Sweet dreams my monkey, I WILL see you soon.