Ethan’s Journey

Ethan is a kid that routinely steps in shit and comes out smelling like a rose some how. When he was a baby and his aorta was so narrow (stepped in shit),his body was quick to make little tributary vessels to go around the issue (smelled like a rose 🌹) He was in heart failure(stepped in shit),  yet was still able to do most of the things he wanted despite the hardship his body was under smelled like a rose). Ethan’s contrast CT scan revealed that Ethan did in fact have a stroke. This means that there was a clot that formed in one of his vessels in his brain that blocked blood flow which kills brain cells. (This is Ethan stepping in shit).  His body reacted quickly and used tributary vessels to bypass the clot so that he could still get blood flow to the brain. (Smelling like a rose). These vessels were already in place but his body utilized them right away. They think because of that he didn’t sustain too much of a brain injury. The stroke happened in the last 24-48 hours.  It is cons

I woke up and went to take a shower this morning. I lost all my soaps.  How does that happen? Luckily I asked if anyone found it and after some looking around, they saw it sitting off to the side. It was 3 full size bottles. Just brain farted and left them behind I guess. Then I went to grab my towels. Nope. Only one towel.  The towels are almost big enough to wrap around your waist. So then I became creative and used a t-shirt to dry my hair. I will get more towels later today.  Ethan gave everyone a little bit of a break last night. I am feeling tired but am eating, drinking and taking vitamins. My rest is interrupted. I usually don’t sleep more than an hour at a time.  I know this will change as he heals. I am even sleeping with ear plugs in. The lights are on all night so the team can measure liquids, see tubes etc, so I just put a pillow over my face....with my mask on. As you can imagine, I wake up beauty pageant ready every time. Imaging took him back for a CT scan with contrast

 Ethan came back from his CT scan. His nurses and doctors said he was trying to text the whole time.  When he got back to the room, keep in mind his eyes are glazed, his hands are tethered, I grabbed his hand and told him I was with him.  He then picked up his left hand and waved.  I asked him if he was waving at me.  He shook his head yes.  He then waved with his other hand. I told him Jesney wanted to call him and he was not going to be able to talk to her, but she could talk to him.   I asked him if he would like that and he shook his head yes. He got to hear her voice and we helped him communicate back to her. I think it was good for both of them. I asked him if he could do a waving video for Paul.  He said yes. He did a double wave to Paul. Now he is just trying to show off. It was nice to see a hint of Ethan there. It brought tears to my eyes and a smile to my face.  He then tried to communicate with me by drawing in the air.  That sort of  worked I got one word.  We then tried t

  After Ethan’s surgery this morning, he has been unresponsive due to his sedation......until the neurology team came to examine him. Ethan has had almost most staff on the cardiac ICU floor.  He had respitory therapists, ICU cardiologist, pediatric cardiologist, 3-4 nurses, ECMO specialist, the pacing team to make sure his heart rhythm is correct. The neurology team came because of the possibility that he could have had brain bleed or brain swelling. When I say team, there were like 5 of them, including the multiple people already in the room.  He has anywhere from 15 to 20 people standing outside his room just watching him. Some call out orders and others do those orders.   Neurology noticed that his left eye was non responsive and his right eye was fine. He seemed to be responsive to in both feet and knees but when we asked him to squeeze his left hand, he would squeeze his right. But at one point he squeezed both indicating he can get both to work. He tried to give me a thumbs up w

 It’s Noon. The Surgeon just called me and they had to do quite a lot of clean up. Ethan is stable. Phew!  There were no cardiac arrests. When the surgeon went in, he found some blood clots outside of Ethan’s new heart. This is because his blood pressure was yo-yoing and the team was chasing his blood pressure all night. They would load up on fluids to stabilize his blood pressure which would good things up and then he would need a transfusion.  They were able to remove those and clean up around the heart. Typical teenage boy is leaving a mess all over the place.  Ethan was also having trouble with his new heart because the pressure in his lungs are so high. This is due to his body acclimating from a defective heart to a normal heart. They think this will stabilize over time. They found a clot around the ECMO cannula that is helping his new heart to pump and his lungs to oxygenate. This was preventing it from working efficiently. They were able to remove and replace that. Also, the sur

 They took Ethan back to surgery.  His night was full of his blood pressure dropping, the team giving him fluids and blood product and the times between those episodes decreased.  They had to take him back to surgery. They suspect the lap sponges in his chest are causing pressure on the new heart as well as they think he may have a blood clot around the ECMO machine that is helping his new heart pump blood. I was able to sleep a bit surprisingly.  I am physically and emotionally drained.   Typical Ethan fashion, this is not how this is normally supposed to go. “We don’t typically see this response.”  I KNOW! This is how he does things. They are worried. I am worried. His chest tubes are draining a lot of blood still, which is abnormal. He has been getting some sort of blood product around the clock.  I am now sitting here hoping he doesn’t arrest again. He has been completely sedated and unconscious since his phone tantrum.  His face is so swollen from all the fluids, he is unrecogniza

 All of the machines helping Ethan right now. Ethan is having bouts of his blood pressure dropping and the ECMO machine gets upset because it isn’t able to move the blood fast enough. It have never seen such a rush of people to a room in my life. There were 8 people urgently communicating what to do with the several medications he is on. The one doctor says “what are you doing buddy?”. He has an elevated blood glucose which could be due to the massive amounts of steroids or the trauma sustained getting the new heart.  They discovered some bleeding but did some imaging and were able to change some things up and get that under control. His lung has not gotten worse. He has been unconscious since his agitated response to his phone. They cranked him up on his sedation. They had to put in another IV in his foot. He continues to get multiple bags of blood product (which has reminded me that I need to start donating more than I have  in the past). His machines will alarm and then the team pic