Crazy Heart Mama

Today has been a rollercoaster day. It started out with our nurse letting us know that the cath lab was ready for Colman at 6:00 a.m., even though our cath time was 7:30 a.m. I mean, my alarm was set to go off at 6:30, so we were a bit disoriented, but we made it down by 6:15.

Colman was super nervous about the anesthesia. I guess he got kind of freaked out with the mask back in March and said he felt like he was going to die. The anesthesiologist was really great with him and told him since he already had an IV, they’d do everything through the IV.

He asked him, “You’ve done this a bunch of times before. What are you worried about?”

And Colman said, “I’m scared I’m going to die. I guess I’m just older now and think about things more.”

“Well, you shouldn’t worry about dying, you’ve got a round trip ticket with me. You’re coming back. Now, what flavor do you want your oxygen?”

Colman laughed, “I want root beer.”

I think he just said that to try to make me gag.

Then the anesthesiologist gave him a big dose of versed, and within seconds Colman’s head rolled back. The nurse asked, “How much did you give him?”

And he smiled and shrugged his shoulders, “A good amount. He said he was nervous.”

Next time I will advise Colman to only say he’s a little nervous. Smaller doses are way more fun. 🙂

They took Colman back and I came back up to the room to finish getting ready. They called me to say they’d placed all the lines. Then they called back an hour later to say they were finishing up the hemodynamics studies. I was settled in, working on some stuff, and they called back after 15 minutes to say they were finished and to meet the doctor down in the consult room.

I was pissed. I gathered up my stuff, and started heading down. Did he even look for the collaterals causing the problem? Out of all the thousands, there’s no way he found it right away. What is going on?

And then it hit me like a ton of bricks that the reason he didn’t go hunting for the problematic collaterals was because Colman’s pressures were bad. And when I finally made it down to the cath lab after thinking I was stuck in an elevator, (I wasn’t. I’m just a dumb-dumb.) the cath doctor confirmed that after finishing the hemodynamics study on Colman’s heart, they decided that anything they might try to do as far as coiling collaterals would only cause more damage and not help him. When he told me what Colman’s pressures were, which had more than doubled since Colman’s cath in March, I burst into tears. Like, legit tears accompanied by snot. I’ve never been so glad I was wearing a mask. It was gross.

I sat there and watched Colman sleep and I don’t think I’ve felt this level of devastation since I found out he was going to be born with HLHS when I was 32 weeks pregnant with him.

The nurse that was taking care of Colman looked at me, and I said, “You’ve got to help me. I have to get my shit together before he wakes up.”

She jumped up. “I’ll get you some ice water. Just take a deep breath and sit there a second. I’ll be right back.”

She brought me the ice water and I took a couple of sips, and said, “How do I look?”

And she said, “Better. Your mascara didn’t even run. You’ve got this.”

After getting back to Colman’s room, the attending heart failure doctor came to talk to me and she told me his pressures are so much worse than they thought. She said she was having a hard time wrapping her head around how strong Colman is and said with the condition his heart is in and his oxygen saturations being so low that she couldn’t believe he was going on two-mile walks with us when we walk our dog. She said, “Him walking two miles is like you or me running a marathon every day of our lives. No wonder he is exhausted. He’s not just physically strong, but he has a mental toughness.”

Then we had the transplant talk, and I signed the papers this afternoon to start the evaluation process in order to get him listed for a new heart.

Colman started waking up about the time we were wrapping up, and he said he was hurting. She ordered him a Tylenol and when they gave it to me to give to him, I said, “Oh, no. He can’t swallow chalky pills. Can we get him a capsule or liquid?”

And Colman said, “Just give me that,” and he chewed it up and swallowed it.

The doctor looked at me and said, “There’s that mental toughness.”

After she left, Colman said, “They didn’t do anything, did they?”

And I said, “No, baby, they didn’t”

He dropped the F bomb, and I told him we needed to talk. But he didn’t want to talk lying down, and he still had a few more hours to lie still after his cath. He wanted to wait until we could have a talk-and-walk around the unit.

When I told him that they wanted to list him for a new heart, he began to cry. And he said, “I don’t know whether I’m crying because I’m sad or because I’m happy.”

And I just said, “Yeah, I don’t know what to feel either. There are a lot of really big feelings we need to sort through. And that’s okay. We’ll do it.”

And after some processing, Colman was starting to feel excited about the possibility of living a life with no restrictions and maybe even one day being able to go running with Liam.

This is going to be wild, y’all.

The plan tomorrow is for Colman to start another diuretic, and they want to start him on milrinone in the next couple of days in order to help his heart squeeze and relax. They think he should start feeling better once we get the milrinone on board. We’re hoping to get his antibody results tomorrow sometime, as well as the approval from the insurance company to begin the transplant evaluation.

Thank you to everyone who is checking on us. We really appreciate it. This stay is weird and hard with all the restrictions. I’m used to having Kevin and my family by my side, helping me to keep Colman’s spirits up and it’s just not possible right now. I would like to say a huge thank you to my sweet friend Lara, who has dropped off cookies and lunch and the Amazon Prime package I sent to her house. (Because nowhere in this hospital do they have a pill splitter.)

Much love,

Heather