So Close, and Yet so Far...

We thought we made it, we thought we might get to say "No SVT episodes since January" come her next Cardiology appointment, we were so hopeful...

Last night was a huge disappointment for us.  At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us.  When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT.  For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all.  Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol.  We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ.  I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat.  FYI:  if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away.  About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death.  Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay.  Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher.  Of course it scared me, it scared me to death, I really don't think I'll EVER get over that.  Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart.  The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck.  Second try was for 10 seconds...Still no luck.  One more try for 15 seconds...And again no luck.  I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(.  Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine.  On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed.  Needless to say we were quite relieved, but also quite stressed.  We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.

Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode.  I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.

We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment.  My goal is still to get her Amiodarone free before or on her birthday.  She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight).  So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now.  That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.

My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain.  I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.

Maybe she'll be off the Amiodarone by her birthday....maybe.

No comments:

Post a Comment