Stellan’s ECHO and EKG went well yesterday. His blood pressure was back in a normal range, and his heart did not show signs of congestive heart failure. Even with all the SVT Stellan has been having, his heart is still in great shape. Hallelujah!
Stellan’s QT is not prolonged any more, however. His Sotalol levels from last week were low. Dr. B is thinking that Sotalol is starting to fail as “Stellan’s drug of choice,” just as happened with all the drugs he was on when he was hospitalized this spring. Stellan usually reacts well to a new drug, his heart stops having SVT, and then, sooner or later, his body either gets desensitized to, or metabolizes unusually, the drug(s) in his system and they fail to keep holding his heart out of SVT. It appears that this is beginning to happen with Sotalol. While Stellan’s SVT has been well controlled for the past few days, other indicators let Dr. B know that we probably aren’t going to be able to go up much more on Stellan’s Sotalol doses safely. If Stellan starts to break through again, we may be close to being out of options as far as Sotalol is concerned.
To try to keep 21 pound Stellan from starting to break through again (because once he begins to break into SVT, he usually ends up with a few terrible days of it, and one of these days that might land him back in the hospital which no one wants), Dr. B has upped Stellan’s doses and moved him from q 8 to q 6. Ironically, Sotalol is usually a q 12 drug, taken twice a day. But Dr. B would really like Stellan’s Sotalol levels to stay very much the same throughout the day, so today he told me to start giving Stellan a dose every 6 hours. Which, in last night’s case, meant waking Stellan not once, but twice in the night for his medicine.
There could be worse things, for sure. But there could be better things, too. Dr. B wants to see Stellan again this Friday and he’ll have his Sotalol levels checked again. Typically, Sotalol levels are not drawn from heart patients, but with the very high doses our little babe is on, Dr. B feels much better keeping a very close eye on how much of the beta blocker/anti arrhythmia drug is in Stellan’s blood.
Sometimes I cannot believe that this is Stellan’s life. That this is my life. That this is our life. And other days, I roll with the punches and don’t miss a beat, mothering our MSC as if nothing were out of the ordinary at all. My emotions are pretty cyclical these days, and I have to assume that’s probably to be expected.
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Monkey see, monkey do!
Small Fry loves to wear her sling and her baby doll around the house. She rocks back and forth, pats and burps her baby, and marches about, slinging her tiny doll. She loves to wear her baby while she reads. And while sleeping. And while eating. And while fussing. And while playing in the yard. And while….well, I think you get the idea.
It’s the most adorable case of monkey see, monkey do for our little girl.
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