7/3/18 - First Day Post-Op

I made it a day out from surgery. My team, family and friends are all so proud of me. I’m proud of me, too. I think everything is going well. I’m very sedated. They weaned the paralytic this morning and by afternoon, I was wiggling some. Later this afternoon was a little scary, as I woke up and was very upset and the team had a difficult time getting me back sedated. I don’t really know, because I was so drugged up. I think waking up and being upset wasn’t a pain thing, but more like I was upset because I woke up and there are tubes and new things everywhere and I can’t move much. Mom hearing this happened was not good...she was in tears. She never wants me to be in pain or scared. It so hard, going thru all that I have. We are scared. Very scared. Yesterday was a long and emotional day for us. We are all exhausted.

Mom and I tried to be a little normal and stay calm thru the changes today. She sat and stood next to me, holding my hand like always. She was telling me all of your well wishes and prayers, and I squeezed her finger so she knew I heard her. I’m doing okay, all-in-all. The care team popped into my room randomly thruout the day, today. They told us they are still happy with my stats and physical appearance. I have drains in my chest and sides that help eliminate swelling by giving excess fluid and blood a place to go. I wasn’t too swollen, just some. Nothing like ECMO swelling! Thankfully. I don’t look too beat up, but over the next few days I may look worse before looking better. My chest has a grey absorbent pad tapped over the chest cavity insicsion. There are the three drains, two cannulas from the Berlin Heart and some wires all coming out of me. The wires are being used to temporarily pace my heart at 150bpm for a few days, until my heart is okay to do it on its own with the Berlin Heart. Everything is under gauze and taped down. The cannulas both have fabric-like tops that my skin is supposed to heal too and help to keep them very secure? It’s very weird. It’s like this:

I’m going to start showing some pictures of me. They will be hard to look at, so please be sensitive. Here we go...this is what the Berlin Heart part looks like (below). Blood churns around in this thing. There is an out valve in the right. That blood is leaving my heart. There is an in valve on the left. That blood is returning to my heart. The care team uses a flashlight, one an hour, and shine light into my blood to look for clotting. The clotting is the scarier part of this whole deal. I’m very high risk for clots and stroke now. Please pray that I never have a stroke. So, anyhow, the blood flows thru here. There is a clear tube that is running this gadget. It pushes and pulls air against a soft rubber membrane on the backside of the Berlin Heart, pushing and pulling blood...essentially “pumping”. It makes a soft ticking sound, kind of like a heart beat. 

The Berlin Heart cannulas aren’t ridged, but they aren’t super flexible either. Once I have healed up and am more comfortable, I should be able to move alright and be pretty safe with this attached. Right now, we are waiting to see how I recover. Taking things hour-by-hour. If all goes well, my body should begin to heal damaged organs, I should grow much better and better digest my feeds, and the plan would be to work toward extubation of the breathing tube. If all goes well with that all, I could have more freedom from this bed and even have the possibility of going outside for the first time! It’s all very exciting! Just praying my heart gift comes soon. This is only temporary, the Berlin Heart, but we hope I will be stronger for my heart transplant because we took this step and did the surgery. One step back, two steps forward kind of idea. So, here are the pictures of the new me: 

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