Ayden's "Thing"-- The SVT

Ayden was sound asleep in Bryan’s arms last night when the monitors started beeping. As long as we have now lived in the hospital, noisy machines are not enough to alarm us… or anyone else. Ayden is so small and moves so much that numbers can often be wrong. However, this time they very obviously weren’t, and I ran into the hallways exclaiming, “230!” The nurses knew exactly what I meant without clarifying. Ayden was going into an SVT… on his own. His heart rate had jumped to the 200’s and was climbing.

Bryan and I have seen this happen before. In fact, we saw him go into SVT three times in one day in the PCCU. Every time that Ayden has had one, he looks completely relaxed, like he’s out for a Sunday stroll. This time was not unlike the others.

And like the others, the nurses were easily able to get Ayden’s heart to settle down. This time they plopped an ice pack on his head. Five minutes later Ayden was eating more than a full feed of his Cheez-It formula. One would think that an SVT combined with slurping down a meal would tucker out a little one with a heart defect, but Ayden was wide awake and ready to play. For him, it was as if nothing had happened.

For us, well, we feel blessed that his SVTs have been so easily handled and that our little boy seems unphased by the event. We have determined that most children have a “thing” (or multiple things) that keeps them in the hospital, and Ayden’s “thing” would be these rapid heart rhythms. Could be worse. Could be better. We are hopeful that the doctors will figure out the correct combination of medications so that an SVT won’t be something that we would fear happening at home.

Having confidence that Ayden won’t have an SVT at home is the goal of the pacing study. Ayden was supposed to have a pacing study today. Dr. Fish, the expert doctor doing the pacing study, was going to come in on his Saturday especially for Ayden to see how Ayden faired on the new medication. Obviously, the pacing study is no longer needed. Based on last night’s episode, the medication isn’t working. Bryan jokes that Ayden had the SVT on his own so that he could spare everyone the pacing study the next day and so he could continue to eat overnight. The boy loves his Cheez-Its! (more on this below)

The doctors have increased his SVT medication dose, and Dr. Fish just came by to tell us that he looked at some of Ayden’s heart rhythms, was encouraged by what he saw, and wanted to do another pacing study tomorrow. While having a pacing study tomorrow will be everyone’s intention, please keep in mind that a room in the PCCU is needed to do this, and Children’s Hospital has been jammed with patients over the past couple of weeks.

Our kiddo will be upset by another pacing study because it means that he will have to go NPO again with his feeds. (NPO is a Latin abbreviation for “nil per os,” meaning “nothing by mouth.") In other words, they won’t let him have his Cheez-Its past a certain hour. Since Ayden has become quite the muncher (he exceeds his feed goal at every feed and has developed some chubby cheeks), he will be unhappy by the NPO status this evening. It will be the fourth time he has had feeds held in a week’s time in order to do a pacing study or to hopefully do a pacing study and then to have those plans fall through. Ayden squeals (and I do mean squeal… this is a new thing for him) at least thirty minutes before he is supposed to feed. There are moments when I wish the squeal would stop and others when I am so glad he knows to squeal, that he feels the sensation of an empty belly, which he didn’t know when he had the feeding tube. My favorite sounds are the ones he makes when he is feeding, and his belly is starting to feel full. Those sighs of contentment are priceless.

We have had some disappointing moments this week. I had one particular day that I cried a lot because I want so badly to take Ayden home where we all can rest and recover (before the next surgery) and do all the things that a mother envisions doing with her baby. I also miss my husband. Though we see each other for a few hours every day, it’s not the same. I recognize that these are selfish thoughts, selfish tears, and I am working to get it together. Besides, I have nothing to be upset about. Our baby boy is doing well. As the doctors keep telling me, “he looks good, he sounds good, his tummy is squishy.” He’s gaining weight, and he’s eating like a champ. He’s such a sweet baby. Bryan and I just fall in love with him over and over again.

I am praying for patience and trust. Ayden will come home when he is supposed to, and his miracle life will continue to be a witness of God’s Love and Healing Hand.