Breakthrough SVT...again...and again.

Now the tally is 4 episodes...that's right 4!  I didn't post about the last one because it seemed insignificant to me at the time, it was last week either Wednesday or Thursday, I can't remember which.  She was in and out of SVT so fast I didn't really have even a second to panic.  I had just checked her heart rate for the night and it was perfectly fine.  I gave her her evening Propanolol, she choked on it a bit, I checked her heart rate again, it was rapidly beating around 240 BPM or so, I blew in her face, checked her heart again, and she was back to a steady 107 or so.  It was that fast.  But now I'm adding it in our "Breakthrough Tally."

Last night she had her 4th episode in 2 weeks :o(.  That's more than she's had in such a short period of time since she was first released from the hospital.  I had worried about her all evening since about 5:30 when she fell asleep in my dad's arms at a family party, one second she was awake and giving everyone snuggles and the next second she was just out cold, no amount of jiggling and talking could wake her.  We put her in the car seat to head for home.  I checked her heart rate just in case, since it's not normal for her to fall asleep in anyone but Mommy's arms and especially not so easily or so soundly.  She was fine, beating slow and steady.  We got home around 7:30pm.  We let the kids relax and be happy outside for a bit then we started bedtime routine.  Miss K was a little restless through her feeding, etc. but I attributed it to a messy diaper.  After her bath I checked her heart rate, I was quite surprised to hear it racing I really didn't expect it.  I had to blow in her face 3 times before it slowed.  The whole time Daddy was saying "Are you sure she's in SVT?  There's just no way you're right.  Look at her, she's fine!  How can she be in SVT looking so good and smiling and giggling at us?"  Yup, that's Miss K for you!  She doesn't show signs she's in it, other than seeming to be a little more restless and wiggly than normal, which she was last night but like I said she also had a messy diaper and those drive her absolutely nuts.  We have no idea what put her in SVT, it was quite obviously a sporadic spike in her heart rate without a cause and like I mentioned in my last post about an episode those are the worse breakthrough episodes.

I'm still sure the missed Propanolol dose on Mother's Day was the cause of the first 2 episodes she had.  Now I'm also pretty sure she wouldn't have had so much of an issue without that dose if she was on a high enough dose.  I think she's due for another dosage adjustment.  She has her 10 month Cardiology check up a week from today so I'm not going to call them, the last time I called so close to an appointment they advised us to stick to our appointment date and they had her EP Cardiologist adjust the Propanolol dose over the phone.  We mine as well wait it out this time, I don't feel it's worth panicking over when we can get her out of the SVT at home on our own and when she's acting so normal when she's in it.

All these months we've stayed consistently hopeful that she would grow out of her PJRT.  We kept telling ourselves "she's only ___ months old it can still happen we have plenty of time" but now that she's 2 months shy of 1 year old we're not so confident.  Her EP Cardiologist warned us in the beginning that if she didn't out grow it by 1 year then she wasn't going to outgrow it.  She's proving to us that her little heart is going to be extremely stubborn and refuse to work correctly without medication and future surgery :o(.

2 Breakthrough Episodes in 2 Days?!?

Last night Miss K had another SVT Episode.  We have absolutely NO idea why, nothing happened to set it off :o(.  Sporadic episodes are WAY worse than episodes brought on by something.  It's not good when we can't explain why she's in SVT.

How did I know to check on her heart last night?  She was acting kind of out of sorts, still wiggly and very active and happy but a little clingy and acting restless.  I picked her up and put my ear to her chest and just knew.  We tried to count the beats with a stethoscope but it's nearly impossible to keep count with a wiggly baby.  Just like last time I'm guessing her heart was buzzing at about 20 beats per every 5 seconds, calculating to about 240 BPM.

It only took a second to get Miss K out of SVT this time, the first physical maneuver I tried was blowing in her face and it only took one time.  When we checked her heart again it was beating slow and steady again.

I'm torn, I don't know if I should call her EP Cardiologist or not.  Two episodes in two days isn't a good thing, especially with this last one being unexplainable.  I can't decide because we know exactly why she went into SVT earlier this week, and we did accidentally skip a Propanolol dose on Sunday so I feel it's mainly based on the missing dose.  I don't know if it takes a little while for the body to get back on track after missing a dose or if these episodes may be a sign that we need another medication adjustment...So do I call today and let the EP Cardiologist know?  Or do I wait and see if she has anymore unexplained SVT?

It's times like this that it sucks going through this for the first time ever, sometimes I just wish I had experience with it already and always knew exactly what to do and when/how to do it.

Breakthrough SVT Epsiode

I think I may need to make a chart and place it in the side bar of this blog to keep track of Miss K's SVT episodes.  I always hope we're done with them when it's been a bit since the last one, but apparently we're in this for the long haul :o(.

Miss K had another SVT episode last night.  This one was brought on by fright, seriously she got startled and scared badly enough to cause SVT :o(.  I'd like to blame her Daddy but I just can't, he didn't know any better, and I'm sure he learned a valuable lesson from it for the future.

Daddy likes to vaccum, yes that's right DADDY likes to vaccum lol.  Last night he decided to vaccum the carpets.  Apparently, and we hadn't noticed this until last night, he has never vaccumed with Miss K sitting in the same room ever before.  Somehow he has managed to do any vaccuming when Miss K is with me either out running errands or in her room nursing.  Daddy decided he better warn Miss K that the vaccum was starting so he WOULDN'T scare her, it wasn't a good idea.  She was sitting quite near to the vaccum when Daddy said in an urgent tone "(Miss K!)" just trying to get her attention because she was very involved in playing with a toy, then "(Miss K!) Daddy's going to vaccum K?  I'm turning it on K?" and then he turned the vaccum on...Miss K jumped bigger than we've ever seen her jump, she flailed her arms frantically and held her breath then she started screaming frantically like someone (or something) had caused her great pain.  I rushed over and picked her up to soothe her and she was instantly fine.  She is not afraid of the vaccum, usually.  I run the vaccum all the time with Miss K right there on the floor and she doesn't even notice most of the time, but that urgent tone of voice her Daddy used to catch her attention set the tone that what was going happen was going to be frightening.  I listened to her heart with my ear instead of getting a stethoscope and it sounded fine to me so I didn't go get the stethoscope out to double check.  I should have though.  We went through normal bedtime routine of feeding her cereal and getting the tub ready when I felt I should check her heart again, this was almost an hour after her scary vaccum encounter.  Miss K was in SVT, I couldn't count it though because she was so wiggly and active I was lucky to have 10 seconds at the most with the stethoscope on her little chest, if I had to make an educated guess I'd say her heart was beating at about 20 beats for every 5 seconds, that's about double her usual 10-12 beats in 5 seconds.  I did some math and as inaccurate as it is I worked some numbers and I'm figuring she was beating around 240 BPM.  I first tried tipping her upside down, this did not work so I tried blowing in her face, another difficult feat with a wiggly and active baby.  After 2 attempts at blowing in her face (and I was sure there was no way it had worked) we check her heart rate again to find it beating a nice slow and steady pace again.

I'm disappointed.  Miss K's Cardiologist said he'd only consider taking her off the Amiodarone on her birthday IF she made it from her 8 month check up until her 12 month check up completely SVT free :o(.  I was hoping to get to cancel her 10 month check up since the Cardiologist suggested we skip it if we felt she was doing great, but I feel if she's still having episodes she needs to visit him and make sure everything is still OK.

Watch for a new chart on the sidebar if I can figure out how to make one...

The Strange Life of Amiodarone

I think I really need to stop stalking the internet for information about SVT and medications...seriously, lately I'm finding more and more information that literally scares me to death.  My most recent finding is an article about Amiodarone.  I found it while trying to figure out what a skin rash caused by Amiodarone looks like.  As I've posted before Miss K has a chronic case of Eczema but a few weeks ago she had a breakout on her chin that turned into an infection.  After a visit to the Pediatrician I was not too concerned about it, especially after it cleared up within days with an antibiotic cream and Hydrocortizone.  This week she developed the same rash on her right elbow and it is now showing up on her left forearm and elbow as well.  I immediately started applying Hydrocortizone to the areas but it still has ended up looking like her chin did so I've started applying the antibiotic as well.  I'm not sure if I need to be concerned or not, I'm guessing it may be the sunscreen we are using that could be causing these rashes so I have stopped using it and switched to another and I hope it works.  Otherwise I am afraid she's starting to have a reaction to the Amiodarone, but in the back of my mind I can't help but think that the rash wouldn't go away with an antibiotic cream if that were the case, or would it????  So today I started researching again and found this article, there wasn't anything helpful about skin rashes but it was enough to terrify me about other side effects, seriously what am I giving my poor little girl?

Source:  http://heartdisease.about.com/library/weekly/mcurrent.htm

The strange life of amiodarone

By DrRich

Amiodarone is the most effective, and certainly the strangest, antiarrhythmic drug ever developed.  (Antiarrhythmic drugs are used to treat heart rhythm disturbances.  Click here for a quick review of heart rhythm disturbances.)  Anyone being treated with amiodarone should understand the idiosyncrasies - and the risks - associated with this highly effective drug.

The strange history of amiodarone in the U.S.

Amiodarone was developed in Belgium in the 1960s as a drug for treating angina, and was quickly released for marketing in most countries except the United States.  Doctors noticed that, in their patients placed on amiodarone, heart arrhythmias greatly diminished.  Clinicians quickly began using the drug to treat cardiac arrhythmias of all sorts.  Within a few years, word began filtering into the United States - amiodarone was a unique antiarrhythmic drug that was said to "always work, and had no side effects."  Both of these assertions, of course, proved false.

In the late 1970s, American doctors began obtaining amiodarone from Canada and Europe to use in their patients with life-threatening arrhythmias who did not respond to any other drugs.  The FDA sanctioned this activity on a limited basis, but the drug seemed so effective that literally hundreds of American electrophysiologists were soon obtaining the drug (one way or another) and by the mid 1980's tens of thousands of Americans were receiving the drug.  The Americans, as a group, studied the effects of amiodarone somewhat more rigorously than their overseas colleages, and here's what they found: Amiodarone was indeed far more effective at suppressing arrhythmias than any other drug they had ever seen, but it produces a bizarre series of side effects that doctors around the world seemed to have "missed."  By the mid 1980s, the FDA was essentially forced to release amiodarone for marketing in the U.S. - the foreign manufacturers of the drug threatened to cut off the American supply (having supplied free drug to thousands and thousands of Americans for more than 5 years,) and the American doctors impressed on the FDA what a medical disaster that would produce.  So, unlike any other drug in modern history, amiodarone became FDA approved without rigorous, FDA-approved randomized clinical trials.  The true breadth of amiodarone-induced side effects took more than a decade to uncover.

Why amiodarone is a strange drug

Amiodarone has several characteristics that make it unique. 

First, the drug takes weeks to achieve its maximum effectiveness.  This is because amiodarone is stored in most of the tissues of the body, and to "load" the body with the drug, all the tissues need to be saturated.  The typical "loading" regimen of amiodarone, therefore, is to use very large doses for a week or two, then taper the dosage over the next month or so.  It is not unusual to give patients 1200 or 1600 mg per day at first, and then maintain them on as little as 100 or 200 mg per day chronically. 

Second, amiodarone leaves the body very, very slowly.  It is not excreted (like most drugs) by the liver or the kidneys.  It is lost when amiodarone-containing human cells are lost - such as skin cells or cells from the GI tract, which are shed by the millions each day.  Thus, if it is decided that one needs to stop amiodarone, the drug remains in the body in measurable quantities for months and months.  The "half life" of the drug, in contrast to most other drugs, is measured in weeks instead of hours.

Third, because amiodarone is stored in many different kinds of tissues, it can produce side effects affecting many different organs.  Some of these side effects take months or years to develop, so it is never true that one can stop being vigilant. 

Fourth, amiodarone works through many different mechanisms, unlike most drugs.  It fits into two separate categories of antiarrhythmic drugs (Class I and Class III, for what it's worth); it acts as a beta blocker; it acts as a calcium blocker; it acts to dilate blood vessels; and it often acts to "block" the effect of thyroid horomone.

The strange side effects of amiodarone

One reason the side effects of amiodarone were not spotted for years was that they often take weeks or months to develop (unlike side effects from typical antiarrhythmic drugs, that usually appear within days).  Also, the kinds of side effects produced by amiodarone are not the kind that heart doctors typically expect with antiarrhythmic drugs. In any case, it took more than a decade for many European doctors to admit (even after the American medical literature became saturated with articles) that they had been missing some rather remarkable side effects.

Amiodarone commonly causes deposits to form on the cornea of the eyes - in fact, this occurs in virtually every one taking the drug.  These deposits often cause no visual disturbances, but not infrequently patients complain of "halo-vision," where looking at bright lights at night is like looking at the moon on a foggy evening.

Amiodarone can cause a very disfiguring blue-grey discoloration of the skin, generally in areas of sun exposure, and that gradually worsens over a period of years.  It is not clear that this "smurf syndrome" clears up when the drug is stopped.  In younger patients this side effect can be devastating.

Amiodarone often sensitizes the skin to sunlight, so that even trivial exposure can cause a fairly nasty sunburn.  People taking amiodarone must often cover the body completely when going out during the summer, especially in hot, humid climates.

Each amiodarone molecule contains four iodine atoms - so a typical dose of amiodarone provides far more iodine to the body than is needed.  It is thought to be the iodine that mediates the thyroid side effects of amiodarone.  The more common of these is hypothyroidism - low thyroid.  This, fortunately, is relatively easy to treat with thyroid medication.  But some patients develop hyperthyroidism - high thyroid - and this can be a real problem and a real challenge to treat. (They hyperthyroidism often does not respond to the "typical" treatment used for this problem.)

Amidoarone can cause liver toxicity, so liver enzymes need to be monitored periodically.

The most serious side effect of amiodarone is pulmonary toxicity - lung disease.  This comes in two flavors.  Amiodarone can produce an acute pulmonary syndrome that looks and acts just like typical pneumonia - sudden onset of cough and shortness of breath.  This condition usually improves rapidly once amiodarone is stopped.  It can occur within days of beginning amiodarone.  The second flavor is more insidious - it is a gradual, unnoticeable, "stiffening" of the lungs that both the doctor and patient can overlook until finally severe, probably irreversible lung damage is done.  This problem can occur years after the drug is begun, or as early as a few months after beginning amiodarone.

When should amiodarone be used?

If Satan were going to develop an antiarrhythmic drug, he would make one that suppressed arrhythmias very well (so people would want to use it,) had none of the typical side effects, but that had a host of atypical, relatively subtle, but ultimately dangerous side effects that doctors were likely to overlook.  He might not be satisfied with amiodarone, but would likely consider it a pretty good first approximation.

Amiodarone should be used for arrhythmias that are life-threatening or that are very disruptive to one's life, and for which there are no other reasonable therapies. Despite its drawbacks the drug has helped tens of thousands of patients, and has restored them to a nearly normal life.  When used appropriately, amiodarone can be a major benefit.

But because of the potential toxicity its use should be limited.  No doctor should blithely prescribe the drug, but should do so with reluctance, realizing that he/she is exposing the patient to long-term risks.  The doctor should, by prescribing the drug, be committing him/herself to being a long-term partner of the patient. He/she should carefully coach the patient on what problems to look for, and together they should be ever vigilant for the side effects of the drug. 

Missed Dose...

Today, for the first time ever, I skipped a Propanolol dose :o(.  I feel like a horrible Mommy, I know it's because it's Mother's Day and my mind was more on myself and what I wanted to happen than on what needed to happen along with my plans...yes I believe I've been a bit selfish today and I don't feel bad about it except that I totally forgot to give Miss K her Propanolol this afternoon because I was in a hurry to get out the door following through with one of my plans to make my day awesome.  I remembered at 6:30 tonight when we got home from a beautiful canyon drive and I sat down to nurse her, that's when I always remember to give her medications because they're sitting right by the nursing chair.  It's considered a skipped dose because you cannot give doses closer than 6 hours and even though she doesn't take it every 8 hours on the dot anymore she's still supposed to take it at the same times every day...she takes it at 8:00am, 2:00pm and 9:30pm daily, this means at 6:30pm this evening we were only 3 hours from her usual final dose of the day :o(.  Yup, I feel like a horrible Mommy.

Now I'm going to stress for the next couple days about Miss K having break through SVT episodes, and I know if she has any it'll be because of the missed dose today, then I'll feel even more horrible :o(.

Though I do have to say I really don't think she'll have any issues missing this dose, it's only 1 she should be fine.  I am going to hope and pray that she really is fine...

Eczema Infection Update

As I said in my last Eczema Update, Miss K's Pediatrician looked at her chin and determined it was an infection.  I have been applying her prescription ointment, Mupirocin, 2-3 times per day as well as  Hydrocortizone.  We are seeing great results!  Her chin and neck look SO much better!  The  Eczema is still there, but it's no longer red and puffy instead it is a yellowish color and smooth, it's nearly invisible now.  We'll keep applying both ointments for another 5 days or so to make sure it's really gone.  I'm so relieved to see it improving so quickly though, I was really dreading another oral antibiotic.

Now Miss K's big brother is battling a bad Eczema outbreak.  He's never had much of a skin problem, the worst we've dealt with is Hives when we try to use any baby wash or lotion other than Johnson and Johnson.  Last week he developed a patch of Eczema on his face, at the top of his nose just near his eye.  I treated it with Bag Balm and it cleared up within a couple days, now it's just a dry spot without redness or an itch.  Over the weekend he developed a bad Eczema outbreak on his bottom, the backs of his thighs and in his groin area :o(.  Bag Balm and A&D did not work so rather than try everything else in the cupboards I resorted to Miss K's Hydrocortizone cream, so far it's doing OK but not clearing up as fast as I would like it too.  I'm just hoping it clears up and goes away without further treatment, if it seems worse or just the same by the end of the week I'll start applying Miss K's prescription ointment, as their Pediatrician gave us 2 refills and suggested I try it on Big Brother if I felt the need too.

I don't know if it's the extreme weather changes (highly likely) or if there is something in our water but these Eczema outbreaks are really getting ridiculous.  My poor babies are suffering with the "itchies" and really not liking the burning and stinging effects of the Hydrocortizone :o(.  Hopefully we can get it figured out and all cleared up soon!

Eczema Update

Miss K's Pediatrician was able to see her early this afternoon amazingly.

Miss K did have Eczema on her chin and neck but the broken skin caused by it allowed bacteria to enter and turned it into a skin infection :o(.  She was prescribed an ointment called Mupirocin to be used until the rash is gone.  I was also instructed to buy some Hydrocortizone cream and put that on her 2-3 times a day.  I hope it works.  The Pediatrician didn't look too confident though, he told me to keep an eye on it and if it only stays the same or gets worse after 5-7 days to call him, he'll need to prescribe an oral medication to help clear it up.  I hope the ointment and cream work, I really don't want to be forcing an antibiotic into her, the heart medications are torture enough.

Today was day 4 of using the Good On Ya Treat cream on Miss K and as I was getting ready to rub her down with it tonight I noticed her Eczema is coming back on her back and shoulders so apparently this cream is a no go :o(.  Instead of trying one more night I opted to go right back to the Aveeno Baby Eczema Therapy Cream, I really don't want her to really break out all over again and have to start from scratch.

Eczema

Miss K has Eczema.  She's had it since her first week officially home from PCMC.  And believe me, it's not just small patches here and there, like my son and I have, it's very large patches on larger body parts.  Her worst area has always been her upper back and shoulders, when not treated effectively it gets looking pretty awful.  She also gets it fairly bad on her chin, neck and cheeks.

After weeks of using one thing after another on her, trying to at least make her comfortable, I found Aveeno Baby Eczema Therapy Cream accepted by the National Eczema Association.  We had tried Baby Aveeno Soothing Relief Moisture Cream that is a bit cheaper than the Eczema one and it seemed to only make her worse.  After just 1 day of the Eczema Therapy cream her skin looked SO much better, after a week it was like she didn't have Eczema at all, as long as we rub her down with it at least once daily that is.  This cream is not cheap.  I've been purchasing it at WalMart, paying about $11.00 for a 7.3 oz tube that only lasts about 3 weeks.

I'm currently looking for other options.  If there is anything out there that could work as good for even a little bit less the cost I would LOVE to know about it.  We have made 2 recent attempts with new creams since finding the Aveeno.  Attempt #1 was homemade cream that my mom found a recipe for, we thought it would work as well or better since it is quite greasy and makes your skin smooth and soft instantly keeping it smooth and soft for 1-2 days after only one application and the total cost to make enough to last about 2 months was about $10.00.  It didn't work for Miss K :o(, after just 2 days of applying once daily her Eczema was back with a vengeance, I swear she was having an allergic reaction to something in the cream as well as an Eczema outbreak.  I quickly went back to using the Aveeno, and just like I expected, her skin cleared up after just one day.  Attempt #2 I am currently trying, it's called Good On Ya' Skin Treat given to me by a friend I work with.  She doesn't remember where she got it, she bought it for her son who has sensitive skin but he wouldn't use it and she's had it for at least a year just sitting in her cabinet.  She gave me this cream to try in hopes it will work.  The problem is I looked up the website to see pricing because she couldn't remember what she spent on it...OMG, it's NOT affordable.  I REALLY hope she did not spend $60 on this 9 oz container.  Hopefully she can remember where she got it so I can go price check there if it works.  So far we are on day 3 of using it and her skin has stayed clear and glowing, I won't be surprised if does end up working, it's because it costs so much, she's turning out to be a very expensive little girl.

My newest concern though is a rash she has developed under her chin.  It started out to be 2 or 3 pencil eraser sized spots close together then grew to about the size of a dime within 24 hours and looks a lot like bad Eczema.  It has been a week since it first appeared and in that week it has spread and has so far not responded to any creams I have on hand.  As of tonight it is now covering a quarter sized area under her chin and has progressed to the right side under her cheek and down her neck, it's now in her two creases in her neck and there are new spots appearing on her upper chest just at the base of her throat.  I'm almost sure it's Eczema but I am a little worried about it since it has so rapidly spread, the lack of response to my usual (and some new) creams and ointments is a little worrisome as well.  I have given this rash one more day to clear up and used one of my last few options on it all day long, it only seemed to get worse as today progressed though.  Tomorrow morning I'm hoping her Pediatrician will be able to fit her in, I'd like for him to look at it and make sure it is Eczema, and then I hope he can give me some new ideas for treating this new outbreak.

Note:  I typed the above late last night and rather than change anything I'm just adding here, I took the pictures this morning and noticed the rash has moved to her right cheek and the corner of her right eye, what was on her neck and chest appears to be worse than it was when I put her to bed last night.  I contacted her Pediatrician and was able to schedule an appointment for her this afternoon.

These are the best pictures I could get of Miss K's chin:

Eye Exam Review Letter

We recently received the review letter from the Ophthalmologist Miss K saw earlier this month.  I was impressed with the Dr. for making sure I received a copy for myself, and also relieved since he got one thing wrong, a very important thing...he sent a copy of the letter to a family Dr. who IS NOT Miss K's Dr., they pulled the wrong Dr. from their list.  Her Dr. is Dr. Larson, with an "on", they sent her letter to a Dr. Larsen "en".  Now I have to call the Eye Dr. tomorrow and ask them to please re-send the letter to her Pediatrician lol, yes I did lol because even though it's a bit frustrating it's also kind of funny in an ironic kind of way.  Most funny to me is this other Dr. Larsen "en" is probably wondering who the heck this (Miss K) is and why he's receiving this letter lol!  Anyway, here's the letter (I liked what it said so I'll share).

Dear Dr. Pilcher,

Thank you for referring (Miss K).  As you know, (Miss K) has supraventricular tachycardia (SVT) and it sounds like the exact cause is not known.  She is currently being treated with amiodarone and propanolol.

Her eye exam was normal without evidence of corneal verticillate or any optic nerve abnormality.  Indeed, she had excellent fix and follow vision, briskly reactive pupils, and a normal cornea, iris, lens, vitreous, optic nerve, and retina OU.  She was quite cooperative for her eye exam too.

I will screen her again in approximately 4 months to continue to follow her progress, but I do not see evidence for ocular toxicity.

Warmest regards,

David C. Dries, MD

My only other correction, not really a big deal and I'm not calling anyone about it though I will make sure at her next eye exam that I "remind" him about it, was his opening paragraph.  I specifically told him at her eye exam that Miss K has PJRT, a condition that causes SVT.  I find it odd that he didn't catch (or maybe didn't understand) what I said.  It's clear he's not in the heart profession lol!

So good to know exactly what he thought of her eye exam from his professional point of view :o).

Home 4-17-12 Miss K is 8 Months Old

Today was Miss K's 8 month Cardiology check-up.  I've been looking forward to this day for weeks, sometimes it feels like there is just WAY too much time between visits.

Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.

Her weight has caught up with her Propanolol dose finally.  Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed.  If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.

He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already.  He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.

He is not taking her off the Amiodarone as of now.  He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own.  He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready.  He is still wanting to keep her on the Amiodarone until her 1st birthday.  He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months.  He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal.  I'm confident we won't be changing the dose of this medication any time in the near future if at all.

Her heart sounds great, the EKG went very well and her blood pressure is great.  Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.

And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine.  The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule.  I am so relieved!  Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us.  Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours.  And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour.  I'm so happy to be able to let her set the schedule now!  The Cardiologist's exact words "Oh heavens, please let her sleep!  She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o).  Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.

We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects.  I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out!  (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT!  I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing)  Getting the lab work done was torture on our sweet baby girl.  The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks.  I admit, I cried too, my tears were almost as big as hers.  I felt awful holding her down like that :o(.  The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again.  We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done.  Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(.  Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.

 Miss K showing off her 2 BandAid covered Owies :o(.  I'm sad to say she is getting some scaring on both arms in these locations :o(.

Miss K is doing awesome, she's growing like a weed and changing way too fast.  She's adorably funny, cute as a bug and the clown of the house.  She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling.  Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o).  She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.