Miss K Update

After Miss K's last breakthrough episode of SVT I called her Cardiologist.  After a little deliberation he decided to up Miss K's dose of Propanalol from 1.5 MLs every 8 hours to 2.0 MLs every 8 hours.  As of right now we are keeping the Amiodarone at 6 MLs once daily.  So far so good!  She has had a few screaming fits equal to the last one that put her in SVT and has remained SVT free through them.  I. Am. Relieved.  We still go in to see the Cardiologist on February 7th.  This is when I will finally get to ask some important questions I've been dwelling on for the past 2 months.  My first question is, now that she's almost 6 months old, what pain relievers can she have while on her heart medications?  I haven't asked her Pediatrician this one though I know I probably could but we haven't had a need for it until this recent ear infection that has really kicked Miss K's butt :o(.  When her Pediatrician diagnosed her with the ear infection he didn't tell me to give her Tylenol or anything, which I do remember him suggesting when our son had one at this same age, instead he prescribed numbing ear drops.  To me this says she probably shouldn't have pain relieving medications?  We'll find out, just in time for teething to begin lol!  Next question, I've heard there is a higher likelyhood of younger siblings of SVT babies also being born with SVT, true or false?  Hopefully FALSE!  We would really love to have another baby, maybe two, but this hearsay really scares me, enough not to have any more kids? most likely not, but enough to make us very cautious with another pregnancy and enough to make us look for signs and insist on constant monitoring until we know for sure we're in the clear.  I know there are more questions, this is why I'm putting them here, so I don't forget, and already I have forgotten one or two more, hopefully I'll remember by next week!

New issues with Miss K:

Since we arrived home from PCMC Miss K has insisted on being swaddled, very tightly, for sleeping.  She will not sleep longer than mere minutes if her arms are allowed to flail and wave around.  We went through the same issue with our son and thought we'd try preventing it with Miss K but it didn't happen.  I can't remember how old our son was when he finally weaned himself from the need to be swaddled, I'm thinking he was about 7 or 8 months old.  All I remember was the struggle of having to make him cry it out at night when he'd break free of the swaddle and wake up.  Miss K has started breaking free of her swaddle, and she does it multiple times throughout the night.  The problem is we cannot let her cry it out, we can't have her getting worked up and risk an SVT episode.  We were instructed from the beginning to keep her calm and happy.  Now we're up all night re-swaddling the little stinker, usually every 30 minutes to an hour.  Most nights we give up and bring her to our bed so that we can try to get at least a little sleep.  Last night I spent the night waking to every move she made, I had to hold her arms down every time she moved so she wouldn't wake herself.  I have no idea what to do.  We need sleep, she needs sleep.  She needs to be trained to sleep without the swaddle but I have no idea how without letting her cry it out.

I've said it before, Miss K hates taking her medications.  A lot of the time she throws them up.  Most of the time she spits them out forcefully.  And all the time she holds them in her mouth at the back of her throat, she can even swallow saliva past the medication without letting any of it go down!  She's very talented.  No amount of flavoring is working.  No amount of force is working.  It takes 5-10 minutes to even get a small dose in her.  I asked the Pharmacist if we could switch the Amiodarone to pill form.  The answer was "No", she's not taking a large enough dose.  Amiodarone tablets come in 200mg only, and Miss K's dose is smaller than 1/8 of a pill, there's no way we could accurately dose her with a pill :o(.  Though this does bring good news to my ears, knowing she's on a small dose compared to other babies I've read about who are able to take a pill makes me fell really good.  A crushed pill in baby food would make life SO much easier for both of us.  But of course I'm more than willing do deal with the compound if it means not upping her dose, I really hate the Amiodarone that much.  All the more reason to hope we can take her off of it soon!

No comments:

Post a Comment