Getting to the Step Down: Take Two

It was not all that long after transplant that the CICU started throwing the words “step-down unit” around sending both John and Hope into a panic. Hope went from possibly going to the step-down unit last Monday to buying herself another week in the CICU with atrial tachycardia. We progressed through beta-blockers (esmelol, propranolol) and then moved to flecainide, and then onto amiodarone trying to find a pharmacological route to treat her arrhythmia. The amiodarone actually had an adverse effect on her and tripped her rhythm up so badly that Thursday afternoon they needed to intervene. Their plan was to try to pace her and if that didn’t work move on to an esophageal pacing, and if that didn’t work try addenizine and if that didn’t work they were going to cardiovert her. All this was to try to restore her to sinus rhythm so we can get moving on the path to going home. They wanted to try each step in their plan one right after another so Hope had more stickers than a two year old let loose in a scrapbooking shop all day so she could hook up to all the machines needed. She has stickers for regular pacing, for the paddles stickers for the ekg, stickers for the esophageal pacing – all on top of her regular lead stickers. Right as they were starting the attending and NP made sure I️ thought I️ could handle myself to stay in the room. I️ can’t explain it, but as much I️ knew it would be hard to watch her get defibrillated, if it came to that, I️ knew I️ needed to stay with her.

They also had to put a nasal cannula back in just in case – clearly Hope was not happy about that.

After confirming that I️ wouldn’t freak out and become a liability, and gathering all the different equipment, they began.

(oh yes that is a bow tie in the background my friends)

First, they tried her pacing wires and confirmed the atrial wires were not working. They moved on to the next step: an esophageal pacer that sits in her esophagus right behind her atria. That didn’t work either so they went to the next step: a shot of addenizine. This typically stops the heart briefly and the NP was thoughtful enough to give me a heads up that sometimes the “flatline time” is a little longer with a transplant because they don’t have the native nerves connected in the heart. Surprisingly, there was no flatline time and this helped diagnose the underlying issue as an atrial flutter, which is not a surprising diagnosis for a transplant. They moved onto cardioversion – basically defibrillating her to shock her back into rhythm. Scariest. Freaking. Thing. I’ve. Watched. Yet. It might seem normal to people in EP and to those 12 people in the room that see his regularly, but I️ will never be able to forget the sound of them barking, “Clear!” Just before watching her body jump from the voltage running through her. They did give her a healthy dose of her good friend ketamine so she had a nice long nap after the cardioversion.

And a few hours later we confirmed that she has definitely found her cry. They watched her Thursday and wanted a few more uneventful days before moving to the floor. Saturday morning rolled around and they wanted to move us Sunday, but we negotiated back to Monday. We just aren’t ready to trust Hope THAT quickly. Don’t forget her Trixie past :). We had a quiet Sunday and then Monday morning we headed to the step down. In the hustle of the move her nurses got confused and she missed a neuro drug dose and she was showing some serious symptoms of withdrawal. She won’t take a pacifier anymore so there is little we can do but hold her every two hours as she screams through the pain of withdrawing from all the opiates she was on. We finally got some relief for her with some catch up on her methadone and some morphine PRNs.

All she has to do is keep weaning little by little and get her feeding to a manageable home schedule and we can get the hell out of this place after four-plus long months!

Below are some cute pics to tide your Hope-fix 🙂

Wuke can’t wait to meet Hope either and is quite excited for Christmas at home this year!!!

17 thoughts on “Getting to the Step Down: Take Two

  1. OHMG! I will bring the wine! The square strong jaw is all I see that does notlook like you! What a wave but home soon to a long week of delivered food home while you just cuddle her all day is just around the corner.

    Liked by 1 person

  2. Holy cow! Cardioversion is not for the weak of heart Mama! She is looking great though. Step down is a great place to be- she is a little Wonder Woman for sure.

    Liked by 1 person

  3. Hope is so sweet and precious! I love the little innocent pictures of her. She’s a doll baby! Keeping the prayers coming and wishing that you get to come home soon!

    Liked by 1 person

  4. What a story she will have to share! Hope is a little doll, the pictures are beautiful. Stay strong Momma! Sending prayers to get her safely to step down.

    Liked by 1 person

  5. She’s just a precious little gift. Can’t wait till you get to take that getting bigger bundle of preciousness home!
    🙏🙏🙏🙏🤞🏻🤞🏻🤞🏻🤞🏻😍

    Liked by 1 person

  6. What a beautiful child! Thanks again for sharing. Tess, I can’t begin to tell you how in awe I am of your strength. Praying for a great first Christmas at home for your family.

    Liked by 1 person

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