Coming Off ECMO

After changing Charlie’s circuit, they felt he was stable enough to trial off of ECMO. They gave him blood and changed his ventilator settings to something more similar to what they would expect off ECMO. They were trying to set his trial up for success as best as they could. 

On Monday morning I got to the hospital first thing. I was excited and anxious. I wanted hm to come off ECMO so badly. Getting off ECMO was the best way to prevent adverse events and that’s what I had been scared of the whole time. The team explained everything as it happened and clamped the tubing. They said the trial would last about 4 hours to make sure he was absolutely ready to have everything removed. But after about 15 minutes it was clear he wasn’t ready. They had an echo at bedside as soon as the trial started, and it showed he was having uncontrolled pulmonary hypertension (high blood pressure in his lungs). This can be dangerous, but they knew how to treat it. Charlie was started on 3 new medications- epinephrine, inhaled nitric oxide, and Remodulin. From previous experience, I knew Remodulin was a strong drug. I was scared that he was going on something so strong because I thought he may not come off. I was also scared to continue ECMO. Timing can be strange sometimes, so I had it in my head that because he couldn’t come off right then, something bad was meant to happen. The nurses made it very clear that it’s VERY common to not come off the first trial and it’s really to see what changes need made to make him most successful. But I felt so defeated. I had tried to mentally prepare for him to not come off, but I was crushed.

The next few days were big rest days. They wanted to give him a chance to recover and let the new medications go into effect. They decided to do another scope but this time deeper into his lungs. That day, Mother Nature also had plans. We had a winter storm and the roads were covered in ice. We left the house almost three hours before the scope was scheduled, and we still barely made it in time. Normally it only takes 30 minutes to get to the hospital if that tells you anything. Luckily we made it safely. His anatomy in the scope was normal but his lungs were very irritated. The pulmonologist didn’t want to cause any bleeding, so he didn’t get much of the mucous out. They also stopped one of his treatments that used 3% saline because it can cause irritation. Since they had to stop these treatments, Charlie still needed help getting out all the mucous in his lungs so he was put back onto the oscillator. This was the special ventilator that gave breaths really fast but at low pressures. It was gentle on his lungs while still breaking up all the mucous and opening up his lungs. That day Charlie was also officially one month old! It was crazy to think nearly all of his life had been spent on ECMO and he knew nothing different. For his milestone pictures, we thought donuts were a fun idea- so he had one donut for his one month. Every month he got a new sign, so this was the first of many. The days felt long, but it also felt like he was just born. Time moved so strangely.

Friday morning was his second clamp trial. I took a craft with me to help with my nerves. I had to be doing something or I would be an anxious mess. They clamped his tubes and started the ECHO. During his first trial, the blood pressure in his lungs was higher than the rest of his body. But Friday, his pressure was less than 2/3 of the rest of his body. The medication was working really well! They kept him clamped. I did my craft and looked at his vitals every few seconds. My stomach was turning, but every time I looked they hadn’t changed. My anxiety turned from scared to excited. At the four hour mark, they determined it was safe to fully remove ECMO! I was SO happy! A few hours later, it was time to take the cannulas out. I was excited, but there was still a small part of me that was nervous. Once he came off, there really wasn’t an option to go back on that soon after. But I knew the team wouldn’t take it out unless they knew he was ready. I had to trust the team with his life. 

We waited in the waiting room, and soon we got to go back to see him. It didn’t matter how small of a procedure, there was always a rush of relief when I got to see him again. I just had to know he was okay. I had cried a lot, especially with his first failed trial, but this time was happy tears. I was so proud of him. After removal, they also started another drip called milrinone to help his heart pump more efficiently. At this point, another drip felt like nothing. He had two full IV pumps on one pole, and another pole with a few more so one more didn’t seem like much. One of the fun parts about no longer being on ECMO meant he could wear hats again! We were really excited to start personalizing him and putting on cute hats, but that only lasted about a day. Charlie has always been VERY hot and sweaty like his dad, so hats were really just for photoshoots.

The next day was rest day to allow him to recover. The day after coming off ECMO was Charlie’s due date. He gained a little over ten ounces and was about an inch longer. He wasn’t eating still, so I was happy he had gained even a small amount of weight. And to show how resilient he was, he even opened his eyes. He made my heart SO full. And he definitely stole his nurses hearts- he had several visitors after getting off ECMO just to see how he was doing. I will probably talk about how much we loved his nurses in every post, and this is no different. It was clear his nurses truly cared about him AND us. Through all of my emotions of his first trial to actually coming off, they were there every step. They hugged me when I cried and smiled just as big as I did. Besides our parents, they were the only people who got to see every part of our stay and supported us every step. While Zach worked, they became my support and my friends. We couldn’t have asked for better. Being off ECMO meant he wouldn’t have two nurses anymore, which felt so weird. He also started to have a variety of nurses. We grew so close to the ECMO team and it’s small niche of staff, it was difficult to have new faces. But nearly every nurse made us feel just as comfortable. Like I said, it had already been a tough journey, but the staff made it just a little easier. We knew he made it over a big hump, but at the time we had no idea how much farther there was to go.