The Other Shoe

Although I have not been as diligent about this of late - both on this blog and in my own head - I have tried to make a point that, even though Ayden has exceeded expectations, even though he has been the "star" of the building, there was never a guarantee it would continue. There was never a guarantee he wouldn't regress at some point. Well, that point has come, in force.

Today, the other shoe dropped.

I will start with the end, then circle back to the beginning. To quote Kelly, the surgeon's nurse, Ayden is "very sick." He is back in the PCCU. He is currently stable, though, in some sense, it's artificial stability. He is on the ECMO machine. This apparatus circulates and oxygenates his blood for him, because he is not currently able to do so on his own. He is sedated. He has a breathing tube. He has an arterial line so his blood pressure can be constantly monitored. He is hooked up to a dialysis-like machine. The doctors are monitoring many things, including his heart rate and his kidney function. Over the next several days, they will be checking for any indication of bleeding in his brain. Very sick, indeed.

Now, to the beginning. Over the last day or so, Ayden's heart rate had been lower than usual. This is a common side effect of the anti-SVT medications he has been on, so that alone wasn't a huge cause for concern. However, yesterday he became less and less interested in eating (his favorite thing to do) and seemed unable to stay awake for very long. Overnight, he refused to eat, seemingly because just one or two sucks on the bottle was all he had energy for before he would doze back off. Obviously, something was amiss, yet the tests run this morning did not raise any major alarms. There were some indications of a possible infection, but not a lot. Around 11 this morning, when the nurses were trying to draw some blood for some more tests, Ayden's heart rate dropped precipitously, his oxygen levels bottomed out, and he went white as a ghost.

In short order, he became the subject of a stat call over the intercom, which, as a parent of a child in the hospital, is pretty much the last thing you want to happen. Within minutes, there were 20+ nurses and doctors either in his room or out in the hallway. They were able to get him stabilized fairly quickly so he could be transported to the PCCU. Once he was down there, however, things went from bad to worse.

I do not yet have all of the specifics of exactly what happened and of how dire the situation got, but I do know he crashed again after he arrived in the PCCU. His heart rate got at least as low as 20bpm (his normal awake rate is in the 130s to 140s). It's possible it even stopped at some point. When it became clear Ayden was not able to get out of this on his own, his surgeon, Dr. Bichell, came up from the OR where he had been prepping a patient for surgery in order to do the ECMO connection (this involved inserting two cannulas into his neck, one to pull blood out and one to put it back in). They performed CPR on him while the ECMO connection was being done. Dr. Fish, the electrophysiologist, was also on hand right away. (Another reason why we feel so fortunate to have this place at our disposal - two of the best doctors in their respective fields were quickly there to take care of Ayden.) A lot of doctors and nurses spent a lot of time and effort to get him stable, which they eventually did.

Back to now. The next 24-48 hours are very important. The ECMO machine is keeping him alive, but it brings it's own dangers. We will slowly get an idea of how much damage this episode has done ("if any," right E?). The three major areas of concern when there is a potential loss of oxygen to the body: kidneys, heart, brain. There have been some encouraging signs. Before we even had the chance to see him, they told us he had started to wake up, move around, and open his eyes. That's a good sign, although they are going to keep him sedated to prevent movement from jeopardizing the integrity of the cannulas in his neck. His heart rate is back up over 90 (he is squeezing his heart, the ECMO machine does not do that for him). He is peeing, which is a positive sign in the kidney function department. His color is returning.

Even more so than before, he is far from out of the woods. What brought this all on is still unknown, although there are some theories. The hope is it was caused by medication, and preferably by medication he will soon no longer need. Dr. Fish had started thinking the SVT problem was simply not going to be solved with drugs. He was at least contemplating the other treatment option - cardiac ablation. That is a surgical procedure involving the use of a catheter inserted into the heart to "burn off" the extra electrical pathway that is causing the SVTs. Given today's episode, and that Ayden currently has external support (i.e., ECMO), Dr. Fish has already cleared room in his schedule Friday afternoon to do the ablation, as long as Ayden remains stable.

Not surprisingly, the nurses and doctors have been amazing. Many of the people Ayden has come in contact with while he's been here made it a point to come and check on not only him, but also on Allison and I. Bridget, his first resident "on the floor," and Katrina, one of his NICU nurses, both heard the stat call. Neither thought it could possibly be Ayden (the call gives the patient's location, but not the patient's name). When they heard it was Ayden, they came right away. Several of his more recent nurses - i.e., his girlfriends on the 6th floor - have come down to check on the three of us, to tell us they're thinking about him and praying for him. There are some truly wonderful people here. We are grateful for all of them.

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As for Allison and I, we are both staying at the hospital tonight in one of the PCCU family rooms (just like what we stayed in while he was in the NICU). It is comforting to be this close. It is comforting that an ECMO nurse will be in his room 24 hours a day, in addition to his PCCU nurse. We are trying to focus on the encouraging things, although it is very hard. I recently wrote about how strong he has been through all of this. That seems so distant right now. I pray this turns out to be nothing more than one more opportunity for him to show everyone here how much of a fighter he is, to show them how much heart he has.

I made a quick trip home tonight to get the laptop and some clothes. I found myself standing in the doorway of his room, which I had opened up to the rest of the house with the thought he might be occupying it soon. I walked in, fell to my knees, bowed my head to the floor, and prayed, out loud (something I just don't do), to God. Through my tears, I begged God to keep Ayden safe, to guide the doctors, to heal him, to allow him to come home and to live in his room and to sleep in his bed.

I told God I wasn't ready for Ayden to go away. I don't want to lose him. I'm too proud of him. I love being his father too much. I told Him Ayden may not be strong enough to get through this part on his own, that Ayden may need some of His strength. I prayed. I begged. I cried.

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Allison took a picture of Ayden tonight. Here is what our little guy looks like right now.