Starting to think...

the Amiodarone was doing a bit more good than bad for Miss K :o(.

We had yet another unexplained SVT episode last night.  It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!

We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(.  Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver.  I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out.  But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one.  This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery.  You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body.  Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine!  I hope this one works the next time as well!

I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(.  Hopefully we can stick to the Propanolol.  And hopefully we can make it 6 months before going back to the EP Cardiologist.  After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes.  And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.

We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.

Miss K is 10 Months!

I can't believe our baby girl is turning 10 months this weekend!  Time sure flies, I just wish we could freeze them in time, or command them to stay the way they are forever and have them obey lol!

Miss K is a beautiful, always happy, always smiley, little flirt of a girl and we absolutely adore her for it.

We had her 10 month Cardiology check up today and it went VERY well.  She weighs 16.4 pounds with a cloth diaper on, so probably 16 pounds even.  I'm not happy about her lack of weight gain these past months but nobody else seems bothered by it so I guess she's fine.

Remember our missed Propanolol dose last month?  And her 4 SVT episodes in a short 2 week period?  Well, Miss K's EP Cardiologist was EXCITED to hear we had accidentally skipped a dose and that she had breakthrough SVT...say WHAT? yes I wrote that correct, he was excited!  I was quite shocked.  He was excited because it's really the only way to know if the Propanolol is doing it's job or not, also a great way to find out if it's the Amiodarone that's doing all the work instead.  He was very happy to hear that she experienced no less than 4 SVT episodes in the 2 weeks following the missed dose, this means the Propanolol IS doing it's job and that she IS 100% dependent on it and that the Amiodarone may not be needed at all.

We talked about our plan of action for the future.  Right now Miss K is taking 6 ML Amiodarone once daily, at one time this was a HUGE amount for her tiny little body but as of today it's now a very low dose.  They recommend 5mm Amiodarone per Kilo in weight, Miss K's 6ML dose is only 1mm per Kilo.  We will not be adjusting her Amiodarone dose, it's staying where it is.  Miss K's EP Cardiologist will be taking her off of the Amiodarone in August for sure, no question about it, he is dead set on this decision.  He has decided he absolutely does not want her to be on the Amiodarone for more than 1 year.  He is confidant we may start experiencing more SVT episodes monthly without it but as long as we can get her out of it ASAP and easily he is not concerned.  If Miss K's SVT episodes end up being more than we can handle then he wants to try putting her on Sotalol and Flecainide instead of Amiodarone, if this works then great but if not then he'll be putting her back on the Amiodarone.  Can you see me jumping up and down in celebration?  If not you should be able to hear me screaming with excitement because I am LOUD!

Because Miss K has not outgrown her PJRT and is most definitely having persistent episodes of SVT it is a positive thing that she WILL NOT outgrow her condition :o(.  2 months just isn't enough time for that and after 1 year it's not going to happen for sure.

The EP Cardiologist adjusted her Propanolol dose from 2ML to 2.8ML three times daily.

Miss K will be going back in to see the EP Cardiologist in August when he will take her off the Amiodarone.  She'll wear a Holter Monitor a month after that to see what her heart is doing without the Amiodarone and then we'll go from there.

Miss K got what may possibly be her last blood draw done today as well (See Side Effects).  The lab technician was great, she got the vein on the first try and the blood drawn before Miss K really got to cry.  It was smooth and easy and Miss K left with a bright green BandAid to match her green and yellow outfit she was wearing.  I'll update later after I hear the results from her EP Cardiologist.

Oh, and an update on my last post:
A day or two after I posted she popped out of her tired slump and became her happy little self again, actually a more happy and giggly little self than before.  I think she may have just been growing, or even more possibly fighting seasonal allergies.

Lots of great news today, it was a good day.  Among all of the great news I was happy to get to receive it alone with Miss K, we got lucky enough to get to leave Big Brother and all his distractions at home with his Auntie and Mommy was happy to have some quality alone time eating lunch out and going to the Dr. just Miss K and I :o).

Primary Children's Medical Center 8-29-11

I had a huge info. overload this morning when a new Cardiologist came by to talk to me and see Miss K. Nobody really had informed us completely about what Miss K really has, all we've been told is she has SVT, hers is very stubborn, they didn't think anything in particular was causing it, and they thought she should outgrow it by her first birthday. Pretty basic. Today the new Cardiologist let me in on what's really going on with her. I just spent the last hour researching what he told me and looking into what we should expect.

So here's what's going on! She actually has a form of SVT called AVNRT. In laman's terms it means she has an extra circuit in her heart that is a slow pathway where her blood is being pushed through. They don't think she's going to outgrow it because it's been so stubborn to treat thus far. They're already planning to have her in the operating room after she turns 5 if she can wait that long, they will be doing a Catheter Ablation. In laman's terms they will be placing several flexible catheters into one of Miss K's main veins forcing them up towards her heart where they will use electrical impulses to induce the arrhythmia, and then ablate (destroy) the abnormal tissue that is causing it. They don't like to leave infants on Amiodarone for more than 3 months because it's highly toxic (yikes!) so when Miss K turns 3 months they will be taking her off of it and putting her on Flecainide. Then they get to hope the new drug works and will hold her off for a while. By the age of one she shouldn't need drugs, she should be OK and not be going into SVT but they're sure it will most likely come back by her 5th birthday, thus the reason for the Catheter Ablation plans.

But on a light note, Miss K is doing great, we've now officially gone 24 hours straight without SVT, YAY!

We are officially upstairs on the 3rd floor in regular care :o). We got moved from our first room to a new room this morning because they needed the room we were in for another patient so now the room we're in is tons bigger and has a bed and it's own bathroom and shower in it :o). Here's to better sleep the next few days and better Hygeine I hope!

We are bringing her Amiodarone dose down from 2 times a day to 1 time a day starting tomorrow. They will observe her on one dose until Wednesday evening or Thursday sometime and make sure she's OK with it then they'll release her!

So for sure there is light at the end of this tunnel, lol! She's doing great and we'll be going home, we actually have a day in mind now :o).