It seems like life has been more hectic than ever in the past couple of weeks, what with being back at work and having out of town visitors and taxes coming up and our car conking out and requiring expensive repairs. But I am having a momentary lull at work and so wanted to post an update!
Magnus had his follow-up cardiology appointment last Monday. They did an echocardiogram (not so fun, he was very wiggly, but it went pretty fast) and everything looked good. His cardiologist told us that her goal is to transition him completely off diuretics, which means that eventually, his only medications will be aspirin and maybe zantac if he still needs it! This was surprising to me and very exciting! And she went ahead and told us to reduce his diuretic dosage from 3 times a day to 2 times a day. It's not a huge change, and yet this makes things tremendously easier for us. For one thing, I don't have to remember to pack his medication for him when he goes to the nanny's. For another, twice daily medication means that we can give his meds at the civilized hours of 7 a.m. and 7 p.m. when he's usually awake anyway, as opposed to before when we had to give him medication at 11 p.m., which was not terribly conducive to getting him to sleep soundly at night.
In addition to the meds being easier, Magnus's weight gain has really taken off since the Glenn, and especially in the last week or so. His post-Glenn physiology gives him a slower metabolic rate, making it easier to gain weight, and his cardiologist also mentioned to us that his diuretic, Lasix, tends to dull the appetite, and we did notice that his eating really improved after we switched to twice-daily meds. The last time we weighed him, we found that he had gained 200g in a 3 day period...that's almost half a pound! He's still tiny for his age, but if he can keep this up, he'll actually be on the growth curve for weight in a couple of months, for pretty much the first time since he was born. He's a bit closer to the curve in his length and head circumference, so maybe he'll catch up on those even sooner.
Magnus's next scheduled cardiology appointment is not until the end of next month. We may end up having to come in sooner if there are any problems, but if not, that will be the longest he's ever gone without seeing a cardiologist in his entire life!
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8 years ago
That's pretty awesome!
ReplyDeleteWonderful news Jen! It was great to get news about Magnus and how he's doing - especially since it's so positive. You guys and your amazing "Wonder Kids"...
ReplyDeleteMy fingers are crossed that he gets stronger and heavier every day. It's truly amazing what a difference the Glenn procedure makes. Julianne is a totally different baby now too. Thanks for your update. Hugs!
I love these positive good reports! You made my day!
ReplyDeleteNancy
Life slowly gets pretty darn normal after the Glenn...isn't it refreshing!?! It'll just keep getting better! One day you'll have to remind yourself he's got a less than perfect heart!
ReplyDeleteGood! Just plain ole good! Happy for you guys, especially the little guy. Hang in there, Jen.
ReplyDeleteHug,
Jacqueline