Ayden and the Terrible, Horrible, No Good, Very Bad Day

Okay. So it wasn't the worst day that Ayden has had, but from my perspective, it was certainly no fun.

Yesterday, Ayden had a good morning. He was breathing comfortably and interacting appropriately. Around noon, they moved Ayden to a different room. (It's the second time Ayden has moved since he has returned to the hospital; we call these moves "the PCCU shuffle.") Not long after we settled in to the new space, Ayden got very upset. He began to cry and thrash, and I had a hard time getting him to calm down. The nurse gave him Tylenol, and he eventually returned to a happy sleep. The nurse and I agreed that he seemed quite content.

Since Ayden was asleep, I retreated to the back of his room to read a book. His nurse was sitting bedside. I remember the nurse commenting that Ayden looked like he had a bad dream. I went to the bedside to check on him, and he was obviously vexed. Vexed became angry and tearful, and eventually he was arching his back with my arms underneath him to keep him from leaping from the bed. (I had seen Ayden turn eggplant and drop his sats before, but I have never seen him arch his back.) He then collapsed and turned blue. I told the nurse that he had stopped breathing, and we held the oxygen in front of his face. He immediately bounced back. His color was fine, and he seemed yet again comfortable.

Fifteen minutes after the first incident, Ayden yet again freaked out. He desatted, turned purple and then blue, and stopped breathing. I couldn't see the monitors to determine anything else, but his nurse later told me that he also dropped his heart rate, which was something he did not do the first time. Since I was closest to the oxygen, I grabbed the mask and placed it in front of his face for a whiff, just as we did last time. After a few seconds, I realized that he wasn't responding, and I placed the mask on his face. With no further response from Ayden, I asked the nurse if we needed help, and she gave me the affirmative. I ran to the hallways yelling in every direction for help.

A swarm responded to both Ayden's predicament and mine. While doctors and nurses bagged Ayden, various staff members held me. I kept telling them to "please call Bryan," but they couldn't hear me the first few times. Once they realized what I needed, Heather, who happens to also be a 6C charge nurse, made the call. At first, she would only tell Bryan that I had requested for him to come to the hospital. When Bryan wanted to know if Ayden was okay, I told her to tell him that Ayden had stopped breathing. When Heather hung up with Bryan, she admitted that she didn't want to tell him that because she didn't want him getting hurt in transit to the hospital.

I know that I cried in the hallways. I know that they eventually sat me down on a chair for fear that I would pass out. I know that they kept asking me what they could do to help me, and I kept declining everything. I kept closing my eyes pleading with God to take care of Ayden, and every time I opened my eyes, I could see the nurses and respiratory therapists/ECMO nurses on "ECMO Row" pressing their faces to the glass and searching my face for what was going on with Ayden. I was grateful for their sincere concern for the boy they had taken care of once upon a time.

I was only in the hall for a few minutes, but it felt like hours. Ayden was easily bagged, and they came to get me. His Vapotherm was still on his face, and they were maxing it out with 100% oxygen and 20 flow. (That would feel like sticking your head out of the window of a moving train.) His color was a little ashy, but he was breathing fairly comfortably. By this time, Bryan showed up, and with the exception of the two of us, not a single soul in the room was that familiar with Ayden. They did a chest x-ray, and it looked no different from the one that morning, which means that he didn't have complete lung collapse. They took a blood gas, and his lactate was ridiculously high, which indicates stress to the body. (big shock) They mentioned putting the Aladdin (CPAP) on his face, and we told them that he would hate it and desat on them. They did it anyway, and he did just that. They then decided to reintubate. We aren't sure if reintubation would have been necessary for Ayden, but now there is no way to know.

Ayden has been fine, though his sats have been kind of low, and because of Dopamine (which was started with reintubation), his heart rate has been high. (It started out in the 170s.) He started out on the vent at 100% oxygen, but they have weaned him to 72%. They are now weaning Dopamine as well, and his heart rate is at a more comfortable rate in the 130s. Ayden IS on a ridiculous amount of sedation because he is powering through just about everything they give him... Versed, Delaudid, Methadone, and Ativan. His chest x-ray this morning was worse than the last one, so they have continued the usual methods of dealing with lung wetness and collapse-- hit therapy and diuresing. They made him so dry yesterday that they stopped the Lasix, but now they want him to pee again. He finally complied early this morning. He responded well to feeds yesterday, and they have continued those today at 10ml/hour. They finally decided to get an ECHO to make sure that his heart still looks okay.

So you might be asking, "What happened?" There are a couple of theories. One theory is that they stopped the Milrinone, a cardiovascular afterload reducer, too quickly, and he wasn't responding well to that. In addition, it is possible that he did not have enough sedatives or anxiety meds on board, so when he woke up, he was scared, hurting, overwhelmed, etc. Another possibility is that his body hasn't fully adopted the new flow of blood that the Glenn surgery creates. Regardless, all have decided that Ayden needs more time. None are concerned about him at all. Though he is not ahead of the curve, they do not think he is behind or in any kind of danger. I wonder if that's easier for them to feel because he's not their baby.

Now we just wait on Ayden to tell us what the plan is for his recovery.