1000 Doses
“Have you already given him medicine?”
“Ugh, he spit it all up.”
“He needs to eat but he hasn’t had his medicine yet and he can’t spit it up again.”
“Why is it that our first baby to be a spitter needs all this medicine and can’t keep it down?”
“Should we keep him up another hour and give him medicine or wake him up in an hour?”
“Did you set your alarm?”
“Did he take his meds okay today?”
“At least he likes the grape flavor.”
“He’s held it down for 15 minutes… are you ready to nurse him or do I need to keep holding him?”
“Did you pack his medicine?”
“Where’s the syringe?”
5:30am, 1:00pm, and 9:00pm. Hours of the day that will forever be set apart in our parental liturgy. Every day since our son, Bishop, was 8 days old he has needed a dose of medicine around these times to keep his heart out of Supraventricular Tachycardia (SVT). That’s over 1000 doses in 1 short infant year of life. Likely more doses of medication than I have received in aggregate during my 36 years of life. The snippets above are things we’ve said well over 1000 times while we stumbled through this fragile journey of tears and fears.
It has indeed improved over time. Early on, he broke through his medication with episodes of SVT on the regular… his medicine is particularly challenging to find the right dose. For some reason, he particularly filters this medicine quicker than most which has led to him outgrowing his dosage much quicker than expected, as well. He also spit up… a lot… which is a wild ride on oral medication. Initially, we would hold him upright and as still as possible for at least 15 minutes in hopes he wouldn’t spit up, which worked about 80% of the time. He’s also on such a high dose that his cardiologist put the fear of God in us about over-dosing him. So in addition to the three times a day drumbeat, there was that added stress as we were learning and terrified. But, it got better. At this point, he takes a dose and crawls and rolls around like an animal and doesn’t spit up – praise the Lord. I need to remember that for whatever the next hard thing is: things often improve over time. Or our expectations adjust. Or our capacity grows. Or all three?
Bishop just turned a year old last Friday! A milestone that we have been dreaming about since the first day of his diagnosis. That is because around a third of the kids born with this extra electrical connection in their heart will grow out of it by their first year of life. I wish the odds were better but 33% is better than many other scenarios! And if he doesn’t outgrow it, he has several good paths forward for a full and robust life that his SVT will not stop him from having. But man, it sure would be a grace to outgrow this.
We will know one way or another very soon. He has a procedure scheduled on March 27th to test his heart. We are now titrating down his dosage of medicine to have him completely off of it four days before the procedure. We welcome your prayers that the extra electrical connection in his heart is gone now or before his procedure!
Extra wire or no extra wire, he’s in good hands and he’s a delightful kid. One constant prayer that we have prayed through the majority of his doses has been. “Lord, heal Bishop’s heart so that he never goes into SVT again. May every breath and every heartbeat beat for you.”
