I mentioned last week that we were going to be discontinuing steroid treatments for Aidan because they weren't helping and we couldn't tolerate the side effects.
To that end, we reduced his dose from 3ml per day to 2ml per day. This week, after the obligatory call to the GI nurse, we reduced it again to 1ml per day. I anticipate his last dose being administered on Sunday.
So everything's proceeding according to plan. Things should be good, we should be happy. Famous last words, which bring us to our weekly update.
So, how are things going this week?
His anger has subsided. He's a little less wildly emotional. These are either signs that the weaning off process is going well, or that he's getting used to the pred. I don't know which, and I don't know what to hope for.
Here's where it gets very sticky. He's eating. He's eating a lot. He MUST be gaining weight, because he has the steroid-hunger like it's his job. He's finishing all three bottles at school (5oz each), plus usually a bottle at home before bed, a bottle in the middle of the night, and a bottle in the (later) middle of the night. Sometimes, we add an extra late-late-middle-of-night bottle in there.
The good part? That makes for 30-35 ounces of formula per day. He's never in his life eaten so much. There's no WAY he's not gaining weight on this much Neocate.
The bad part? He's not sleeping. His 3h nap has dwindled to 1 hour. He stays up late crying and thrashing in bed (so, okay, maybe the anger's not entirely gone). He wakes up 2 or 3 times per night STARVING and needing to be fed. He's not a very happy little guy, and we're not very happy little parents.
I apologize for ending on a negative note - but here's to hoping next week looks up!
To that end, we reduced his dose from 3ml per day to 2ml per day. This week, after the obligatory call to the GI nurse, we reduced it again to 1ml per day. I anticipate his last dose being administered on Sunday.
So everything's proceeding according to plan. Things should be good, we should be happy. Famous last words, which bring us to our weekly update.
So, how are things going this week?
His anger has subsided. He's a little less wildly emotional. These are either signs that the weaning off process is going well, or that he's getting used to the pred. I don't know which, and I don't know what to hope for.
Here's where it gets very sticky. He's eating. He's eating a lot. He MUST be gaining weight, because he has the steroid-hunger like it's his job. He's finishing all three bottles at school (5oz each), plus usually a bottle at home before bed, a bottle in the middle of the night, and a bottle in the (later) middle of the night. Sometimes, we add an extra late-late-middle-of-night bottle in there.
The good part? That makes for 30-35 ounces of formula per day. He's never in his life eaten so much. There's no WAY he's not gaining weight on this much Neocate.
The bad part? He's not sleeping. His 3h nap has dwindled to 1 hour. He stays up late crying and thrashing in bed (so, okay, maybe the anger's not entirely gone). He wakes up 2 or 3 times per night STARVING and needing to be fed. He's not a very happy little guy, and we're not very happy little parents.
I apologize for ending on a negative note - but here's to hoping next week looks up!
Hey, I thought that picture of the cat with the confetti was super duper positive!
ReplyDeleteDon't apologize for being frustrated. I mean, do what you want. I don't want to be bossy but it's just as important to be okay with that as it is to be okay with being super duper happy when things are amazing.
Additionally, if this is you being negative, I clearly have a few tricks to show you. We can do better than this!!
Confetti cat was UBER positive! I need a negativity tutorial.
DeleteI'm so glad he is eating so much! I hope his sleeping gets better soon <3
ReplyDeleteWith the benefit of another month behind me, I can truly say that things are getting better. Thank you :)
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