It's Been Quiet...

Quiet is good.  Really, really good :).

Miss K has been doing so great.  We're now 16 months SVT free!  Not much significant weight gain going on, still on the same doses of 3.2 mL Propranolol 3 times daily and 1.2 mL Digoxin twice daily and so far so good.  Her heart rate has seemed to be a bit faster than we had gotten used to so I'm thinking it wont be long before we're upping the doses, I'm praying we don't have any SVT to cause the dose increase, I'd rather avoid that if we can.

Strangely enough I never blogged about our scary double dose incident???  Things must have been crazy busy around here for me not to take a moment to write about it.  Quite a while ago, I'm thinking before her last Cardiology visit so likely sometime in February, we had an overdose scare.

It was a Saturday so Daddy was home for the day.  For 2.5 years we've been giving the Propranolol after Miss K wakes up from her afternoon nap, Daddy knows this.  But a few weeks before this day I had started giving Miss K her Propranolol dose before nap rather than after nap so we could give it to her an hour or so earlier at night, but somehow I failed to mention it to Daddy.  I was working away in my bedroom when Miss K woke up from nap, Daddy issued the Propranolol and then came to ask me what was for snack.  After talking for a moment something made me ask him if he had given her the Propranolol.  He said "yes, as always" and I started to panic.  It had barely been a little more than an hour since I had given it to her.  Since it was a weekend I knew calling in to Primary Children's would result in talking to the on call Cardiologist rather than our own EP Cardiologist, likewise I knew that the on call Cardiologist would likely panic as well and insist I bring Miss K into their ER for monitoring.  Wishing to avoid this if possible I opted to call our Pharmacy and speak to the head Pharmacist hoping he could give me something to go off of.  I'm happy I made that call.  The Pharmacist was quite calm with me, he explained that there was really nothing we could do because it is a liquid medication, therefore it is pretty much immediately absorbed into the body and there's nothing to do to reverse it at that point.  He suggested we watch her closely and keep a very close eye on her activity level and heart rate, if anything worrisome came up to take her to the ER immediately.  He also advised us to skip her night time dose and just give the Digoxin that night.  This happened in pretty good timing because Miss K also happened to be running a pretty high fever from an illness we had run through the house at the time so Miss K's heart rate was elevated quite a bit when the double dosing happened.  I don't know how this would have affected her on a normal, non sick day, but having a fever seemed to equal it all out, the extra dosing did not lower her heart rate amazingly, it stayed in the 120-130 BPM range the whole afternoon/evening and through the night, I think the double dose may have actually helped her stay out of SVT rather than doing the opposite, we'll never know if that high fever would have set her into an episode or not because of this double dose, likewise the fever may have saved her life because without the elevated heart rate caused by it the double dose may have lowered her heart rate too much and landed us in the ER, we'll never know, all we can do is thank God for whatever made this situation work out to be OK.  But a real lesson was learned, from that day on if both of us parents are taking care of Miss K together we always ask one another if her medications were given before giving them to her.  For the most part I am in charge of administering because I'm with her 24/7 so it's not too difficult but when we are together we double check with each other rather than assuming anything.

An ER Visit

This past weekend proved to be quite crazy and unexpected to say the least.

Thursday night we made our normal trip down to Miss K's grandparents house for the weekend.  Daddy had accepted a quick weekend job down in the valley working with a good old family friend from Southern Utah so we were heading to Grandma's house a day earlier than normal.  Friday seemed to be quite a normal day for Miss K, she acted a bit more tired than usual but nothing to really worry me.  By Friday evening she had started to act a bit off, she refused to eat her dinner even though it was one of her favorites, chicken nuggets and fries, she was very quick to tears and she was asking to "potty" about every 5 minutes.  I didn't think too much of it, just that maybe she was overly tired or something.  Daddy got back from his day's work and was snuggling Miss K on the couch, she was suddenly extra cuddly and clingy, within minutes she was violently throwing up, and it just kept coming.  We cleaned her and Daddy up a bit and sent them to the shower together, I had to pry her beloved blanket from her and toss it into Grandma's washer on a quick cycle to get it clean again.  Soon after cleaning up Miss K stated "My belly feels better now!", but I wasn't convinced, I hate vomit, it makes me vomit at just the thought of someone else doing so.  Lucky for me (and my sweet babies) Daddy isn't the least bit bothered by vomit, therefore Daddy is the vomit king, if any child is having tummy issues and throwing up I call Daddy, who cuddles them, provides the bucket when needed and cleans up any misses, he also sleeps in their little toddler beds with them through a night of puking whenever necessary, while I lay in our bed with all doors closed and a pillow over my head trying my hardest not to "toss my cookies" as well.  Yes, it's that bad.  I kept a close eye on Miss K, checking her heart rate and temperature constantly, refusing to let anyone feed her and insisting she stick to tiny sips of water or chewing on ice in order to prevent another violent puke fest.  Somehow I missed the second round of vomiting as I was getting Miss K's brothers ready for bed and Grandma was snuggling Miss K, so glad I didn't have to deal with it but so sad poor Grandma did instead, at least she had a bucket ready and Miss K did not miss though ;).  Immediately after Miss K's 2nd round I ran for her medications planning on it being another 20-30 minutes before her next round, if there was one, hoping that was long enough for her body to absorb the medications and prevent her throwing them up as well.  Turns out the 2nd round was the last round of vomiting for our sweet girl, thank heavens!  Daddy slept with Miss K on the futon all night, apparently it was a very restless night for both of them but no potty runs or boughts of puking were involved.

Saturday morning Daddy went back to working with our friend and I stayed at my parents house with the kids all day.  Miss K slept until 10:00 am, she had a very low grade fever (about 99.9), she didn't eat more than a tiny handful of Rice Chex cereal and a small serving of yogurt all day, she maybe had a few sips of water though she had me convinced it was a lot more than that as her cup somehow was always empty, apparently it was empty for other reasons I still do not understand.  She took a VERY long 3.5 hour nap, so very long compared to her normal 45 minutes to an hour.  I just figured she was sleepy from her sick tummy, I did not think twice about her using the potty every 5 minutes through the day since I thought she was drinking water like crazy.  The worst is I didn't even think for a second about Miss K's lack of food for the past day and a half, combine that with taking Propranolol (which has a side effect of lowering blood sugar) and you can have disaster, but being the distracted mom that I was this past weekend it never crossed my mind :(.  Despite Miss K's very long nap she still fell asleep around 9:30pm for bed, and slept silently completely through the night until about 9:00 am.

Sunday morning Miss K did not want to leave her bed, she snuggled into Daddy and just laid there until Daddy finally asked her if she wanted to eat, she was eager for food, she begged us for cereal and milk and we gratefully obliged.  I think she drank 4 glasses of milk in about 10 minutes, but she never touched her cereal.  She'd been awake about an hour when she suddenly took a turn for the worse.  Miss K looked horrible.  Her lips went BLUE.  Her complexion was extremely pale.  She was moving quite slowly.  I picked her up and asked everyone else in the room if they thought her lips were blue, I was praying it was the lighting, Daddy, Grandpa and Grandma agreed with me though, her lips were quite blue.  We pulled the stethoscope out and checked her heart rate, it was somewhere around 160 BPM, quite high for Miss K but not SVT and I was not hearing her classic PJRT beats, all sounded well.  We checked her temperature, she was at a nice 97.8 degrees.  This is about the time that Miss K started slurring her speech, we could barely understand her, and she started going limp in our arms and trying to fall asleep right there in the noisy family room.  I only debated on what to do for about 5 minutes, it was apparent to me that she needed to be taken to a doctor.  We quickly got ourselves dressed and bundled Miss K up, Grandpa and Daddy gave her a Priesthood Blessing (a sacred blessing in the Church of Jesus Christ of Latter Day Saints, in this case used to heal the sick and afflicted) kissed her brothers goodbye, and headed for the ER.  We took the 30 minute drive to hospital in about 15 minutes, all the while I was patting her face, calling her name and trying my dang hardest to keep her awake for fear she may not wake up if she was allowed to close her eyes.  The ER was quite quiet, we didn't have to wait to be checked in, in fact before we even got Miss K's name into the system a nurse was ready to take us back.  We got her into a room and settled to wait for the doctor.  While we waited I was holding a very cuddly Miss K, by the time a nurse came into the room Miss K was out cold and rag doll limp in my arms, the nurse laughed it off and said that would make her an easy patient, I scolded him and let him know it may be easier on him but it was freaking her Mama out!  He took her vitals and told us the doctor would be with us soon, he assured us the doctor was combing through Miss K's medical history and that they were all amazed at how much there was to read up on for her before treatment, he let us know the doctor may be a few extra minutes because of this.  Sure enough about 15 minutes went by before the doctor came to examine Miss K.  He checked her vitals and ordered a urine sample and requested they hook her up to the heart monitor, pulse ox and blood pressure cuff.  He then asked me about her seizures she had had as an infant, talk about panicking me!!!  He had his doubts but something was nagging him to at least ask about it, once I described the seizure activity she had at a few weeks old he decided we were not likely dealing with the effects of an over night seizure, whew!  He then had me go over all her usual symptoms of an SVT episode, which are NONE, I had to tell him that the way she was acting would only be the effects of SVT if she had been in an episode for 2 or more hours straight and I was confident she had not had any SVT for any amount of time.  He then decided her symptoms could be Digoxin toxicity, I assured him this wasn't likely since she has been on the same dose for almost 20 months and has gained 2 pounds in that time but he still wanted to be sure, he ordered a blood draw to test his theory.  The doctor had us take Miss K potty, she tried so hard to pee for us but she just couldn't go so the doctor ordered IV fluids.  The nurse came in to put in an IV and get blood, you would have thought Miss K remembered the drill from 2.5 years ago, the nurse asked her if he could put in an IV and she said "No IV!" and started to whimper, this sweet baby hasn't had an IV in 2.5 years, nor has she had blood drawn for any reason in 18 months!  I am amazed at how strong my sweet baby girl is, she cried but didn't scream and she held so very, very still for the nurse and technicians, they got the IV in in less than a second and then got the blood drawn just as quickly without much of a fuss. 

She was hooked up to monitors, I'm very happy to say everything looked and stayed perfect our whole stay, no worrisome heart rate or blood pressure. 

An EKG technician came in and hooked Miss K up to the EKG machine, she said her heart rate looked fine but they were sending it up to Dr. Hoffman, the on call Pediatric Cardiologist who first saw Miss K when she was born.  Then we were left to sit and wait, and wait.  Miss K watched cartoons and snuggled us, she asked to potty about 5 times but never gave us anything.  After 1 full bag of IV fluids she finally gained some color in her cheeks and perked up just a bit.  The blood work came back negative for toxicity but positive for infection, though it was very mild and nothing concerning it just meant she had an infection or had had one recently but her body was fighting it.  About 1.5 hours into our "visit" the two medical technicians, a very young man and woman who were so sweet and cute, came dancing into the room waving a pink and green thing in the air and saying "Look what we got for you sweet girl!  It's the neatest thing, it's a SUPER HERO cape!  We thought you absolutely needed one for being such a brave little girl."  Miss K smiled a tiny smile but I could see in her eyes she was excited, they sat her up gently and wrapped it around her then helped her lay back down and stroked her cheeks and hair. 

Another hospital personnel, non medical, came in and asked if Miss K needed a toy, he said he had heard her whimpering and crying during her IV and felt sad for her, I told him that would be nice so he left to see what he could find.  He came back with a squishy bath tub fish and a fluffy stuffed horse, I find it strange she preferred the fish over the fluffy stuffed horse lol.  When we still could not get Miss K to pee they brought in another IV bag of fluids.  It was about 45 minutes later when Miss K asked to potty again, the fluids were gone at this point, when she FINALLY peed she looked up and said "I went!" then giggled and said "I go pee Mommy!", I haven't seen her this excited about pee since she potty trained a year ago lol.  We took the urine sample to the room and waited for someone to come get it, then it was off for testing.  Another 30 minutes went by, Miss K fell asleep and slept very soundly. 

Finally the doctor came in to say the urine showed infection, Miss K has a bladder infection as far as he can tell, it needs to be cultured to make sure, this takes 2 days, so we will get a call in a day or two confirming or denying a urinary tract infection but until then she has been prescribed an antibiotic.  The doctor and nurses got to see Miss K's true colors at the very end, all that time they weren't too worried about her and thought she was acting pretty OK even though I kept telling them she was absolutely not acting normal in any way, at the end the nurse came in and we asked if the empty IV bag could be taken off, she told us we could take everything off because we were being discharged, Miss K started begging "take it off! take it off!", when the nurse and I weren't moving fast enough to get the wires and IV off of her she started to yell, very forcefully, "take it off! I don't like it! all done now!" and started to throw a small tantrum.  The doctor walked in on this and laughed, then looked at me and said "wow, I can see why you were worried hours ago, apparently she feels much better now!"  As soon as everything was taken off of her she looked up at me with the saddest face and said "I wanta my bampa" (translation in case you need it ;) "I want my Grandpa"), I said "what?  You want Grandpa?" and she said "Yes, I wanta my bampa now, I wanta the rock a baby bampa" ("Yes, I want my Grandpa now, I want to rock a baby with Grandpa"), the nurse smiled and asked if she was a Grandpa's girl and Miss K said "Yes, bampa girl", I promised her we were going to "Bampa's house" as soon as we were done.

The joy of having a heart baby on medications:  having to double, even triple check with the doctor that he made sure, without a doubt, that the antibiotic prescribed was OK with Propranolol and Digoxin and her specific condition and then having to double and triple check with the pharmacist filling the prescription to make sure he came up with the same information on the medications and the antibiotic.  They all looked at me like I was the best mom in the world though, complimented me on knowing what to ask and advocating for my child 100% :).

First lesson learned:  While taking Propranolol NEVER allow Miss K to go even a day without adequate food, no matter her state of mind, she MUST eat.  Low blood sugar is a side effect from Propranolol, not eating gives you low blood sugar, combine the two and you have lethargy, chronic tiredness, and slurred speech.

Second lesson learned:  Dehydration SUCKS!  Be 100% sure Miss K is drinking enough fluids throughout the day EVERY DAY!  And just to make sure, join her in the restroom at least twice a day to see that she really is peeing and not just sitting there desperately trying to no avail.

I feel like a horrible parent letting it go as far as it did.  But I have been able to make myself feel better knowing I took action ASAP and got her to an ER rather than waiting until Monday to see her doctor.

Today is Monday and Miss K is feeling, and acting, MUCH MUCH better.  She's almost herself again.  She's happy, she's playing, though maybe not as energetically as normal but still playing, she's eating more though still not much, but most important she is drinking tons and tons and peeing so we are likely to kick the infection quickly.

Here's to hoping we can avoid any more ER trips for any of our kids because the ER really, really sucks, not to mention the worry and stress and cost!  I really don't want to see the bill when it comes, can I just hide it away and never open it hoping it just goes away on it's own?  So much for wishful thinking ;) ;).

11 Months SVT Free

I should be jumping for joy, happy as ever, smiling ear to ear, joyous, etc., etc., etc....but I'm NOT.  I was all those things last month, and the month before, and the month before that.  Each month SVT free is a huge accomplishment for this little girl, don't get me wrong I am EXTREMELY grateful for these past months and I pray with everything I have that we can keep this streak going.  So why am I so down about it?

A little more than a month ago a fellow PJRT mom made the decision to take her 4 year old PJRT daughter off of all her medications, she had been SVT free for over a year and they felt it was time to see how she did on her own.  Almost 6 weeks went by of nothing but good news, I admit, I got my hopes up for her and for Miss K.  Any time a child is considered to have outgrown their PJRT I get my hopes up for Miss K's diagnosis.  Almost 6 weeks of thinking we had more hope, another PJRT child had most likely outgrown her condition.  Almost 6 weeks of no medications and her sweet mama breaks the news that her sweet little girl had been taken to the ER via ambulance having a severe SVT episode.  She was put back on her medications and sent home stable, a few days later she was taken to the ER yet again having a severe SVT episode, her medications were adjusted and she spent over 12 hours in the ER as they watched her closely to be sure she would be OK, she was sent home on a higher dose of medications than what they had ended almost 6 weeks before.  My heart broke.  This terrified me.  We are a little more than 6 months away from the date her EP Cardiologist said he would remove all medications if she stays SVT free until that date.  What if she follows the same fate this little girl did?

Earlier this week another SVT mom made note in our facebook group that her 3 year old, who has been SVT free for over a year but, like Miss K, is still medicated, had her first SVT episode and was rushed to the hospital.  Her medications had to be adjusted and she still had yet another SVT episode a day later.  This mama had been hopeful, like us, that her daughter had outgrown her SVT and they had plans to take her off of her medications in the next month or so, now it is apparent she still needs the medications and at a higher dosage.

These two very recent experiences have completely dashed my hopes.  I've always felt that we are walking on egg shells, so to speak.  I've always had the possibility of an SVT episode on my mind, though pushed back as far as I can hoping I am wrong.  Hearing about other children, who are 1-2 years older than Miss K, having such unexpected breakthrough SVT after so long being SVT free is a huge slap of reality right to my face.

Miss K is doing great.  She's still experiencing moderate hair loss occasionally, and that's the weird part it's only occasionally, I've begun to think her iron levels may be dipping from lack of proper eating when she gets into her little eating issues and being on the Propranolol during these eating issues and iron dips makes her body take a harder hit than normal which is probably why she looses a lot of hair for a week or two and then stops for a bit.  She has a cold right now, nothing serious just the sniffles and a bit of congestion, she fevered yesterday but only just a bit sitting around 99.8 degrees, a bit more tired than usual but otherwise seems fine.

IF Miss K makes it to 1 year SVT free we will be having a big party for her, no matter how long she may or may not stay SVT free, a year is wonderful and I want to make sure we celebrate it.  I will not let reality's slap to the face stop me from keeping up hope, she has beaten a lot of odds and shown her EP Cardiologist that she is a very special little girl from day one, maybe, just maybe, she will be that different case that actually has outgrown her PJRT.

10 Months SVT FREE!

And we're walking on egg shells.  Waiting for the ball to drop.  Panicking.  Preparing.  And all at the same time while we're also thanking God, rejoicing, feeling blessed, hoping and praying.

Almost a whole year SVT free.  We never thought we'd see this.  Of course, we know we need to consider the fact that Miss K has only gained 1 pound in this whole past year and just maybe her medications are just working really great because she's not getting heavier.  But we can always hope that maybe she has outgrown her PJRT, or is slowly outgrowing it at any rate.

Miss K is still taking 3.2mL Propanolol 3 times a day and 1.2mL Digoxin 2 times a day.

The life of an SVT baby:

Syringes all over the house, both dirty and clean.
Medications piled up in her room, out of reach of course, but still visible so we don't forget to give them.
Empty medication bottles and boxes throughout the house, always at least one in the trash can on trash day.
An alarm set on both Mommy and Daddy's phones so we don't forget her afternoon Propanolol.
Stethoscopes in every room, though they are rarely used lately they are still there.
Heart rate App on both Mommy and Daddy's phones (cardiograph app).
Our favorite local pharmacy knowing Mommy's face and name, knowing exactly what I am there for each month.
Our favorite local pharmacist knowing and usually remembering without fail that Mommy prefers the Propanolol in 2 small bottles rather than 1 big bottle and that she prefers the prescription label for the Digoxin be placed on the bottle rather than the box.
Miss K understanding, and allowing, us to "hear" her by placing our ear to her chest and listening for a few seconds.  (done about twice a day)
Miss K understanding, and allowing, us to place a hand over her heart and holding still long enough for us to feel her little heart beat. (done a few times a day)
Miss K knowing the word "medicine" and knowing exactly what it means.
Miss K having medications such a huge part of her daily routine to the point of her reminding us when it's time for medicine even when we forget.
Miss K finding play syringes in a dress-up doctors kit and telling her baby doll "time for medicine!" while putting said syringe into her baby doll's mouth and pushing the plunger.
Miss K finding play stethoscopes in a dress-up doctors kit and placing it on her own chest to listen and then placing it on her baby dolls chest, somehow putting it in the correct location every time.
Having to tell Grandma "No" for sugary sweets and drinks even though the other grandkids all have them at the moment.
Finding Sugar Free popsicles and treats in one Grandma's house set aside especially for Miss K.
Having to remind Grandpa's and Uncle's "no tipping upside down!" and "no tossing high into the air!", these things have NOT caused SVT yet but we aren't willing to chance it so we just plain don't allow it.
Doctors appointment reminders for Cardiology coming in over the phone every few months, set in Mommy's phone calendar, and written on the family calendars all over the house.
Avoiding illness like the plague, more paranoid than the average parent, praying to avoid fevers at all costs, staying home all the time, rarely getting an adventure at any public place especially during cold and flu season.
Being familiar too with Primary Children's Medical Center.

So many more things I could list if I could remember them.  But we'll take all of it to get to keep our sweet little princess!

Lately I have been feeling so blessed, and then so guilty, about Miss K's last few quiet months.  The guilt comes from knowing a few other sweet PJRT babies who are not as lucky as Miss K yet, they are still enduring a lot of trial and error with their medications and such and dealing with SVT and frequent Cardiologist visits.  Though I know we have been there, Miss K was not been spared these trials in the slightest, but I almost feel like it's not fair that she is now mostly healthy and SVT free when they are still struggling daily :(.  We pray for them all the time, and worry until we hear good news from them.

Miss K is 2 Years Old

Very bitter sweet.  I am so proud of my baby girl for hitting her 2nd birthday and doing so well in the past year!  Of course I am happy she is growing and changing into a beautiful little girl.  But I am so sad to see the baby leave and the little girl come.  She has been our "baby girl" for 2 years, we still call her baby girl around here, but in the past few weeks she has changed a lot in many ways, not only does she no longer act like a baby but she also no longer looks like a baby.  She has completely lost the baby looks and gained the little girl looks, but of course she is still adorable.

Miss K now weighs 20.4 pounds and is 33.4 inches tall.

She is doing great!  We have now made it almost 8 months SVT free, a very amazing big deal for Miss K.  The most amazing part is the 2 fevers she has endured and made it through with no SVT, her heart rate barely went up enough for us to even notice a faster rhythm than normal.  She has also made it through not 1 but 2 missed doses of Propanolol and had absolutely NO SVT, quite the change from her normal SVT episodes within 24 hours of the missed dose!  I posted about missing a dose just before July 24th but I have yet to mention the next missed dose...just this past weekend while visiting her grandparents, Daddy was out of town and Mommy was quite tired and distracted and somehow completely forgot the morning dose of both Propanolol and Digoxin, I didn't realize I had missed them until around 1:30PM, yes that's right it took clear until afternoon and around the time for her usual 2nd dose for the day before I realized we had missed her morning dose.  I opted to just consider the Propanolol afternoon dose skipped and gave her what would have been her normal morning dose at that time, then at bedtime I gave her her evening dose of both.  I worried that since we had missed a dose barely a week before that she would have SVT from this missed dose but I was pleasantly surprised to never catch any SVT :o).  I know without a doubt her EP Cardiologist is going to love hearing this news.

Miss K is our amazingly mischievous little princess.  She is into every kind of mischief possible, things her older brother never would have dreamed up doing she is quick to discover and is great at making Mommy go completely nuts throughout the day.  She is very active and very fast, before I can get one mess of hers cleaned up she is making/into another mess.  She is adorably lovable and full of snuggly hugs.  She loves to be snuggled and loved on, when she's not too busy anyway.  She is a princess without a doubt.  She loves to play dress up, take care of her baby dolls, have her nails painted, have Mommy put eye shadow on her, wear jewelry, have her hair done, were hair bows and flowers, she absolutely loves to wear dresses, and her favorite and most preferred color is PINK.

7 Months SVT Free with a Twist...

Yahooo!!! We have made it to 7 months SVT free!  Such a great feeling!  And she even experienced a 3-4 day stretch of high fever (ranging from 102-104 degrees) with no other symptoms and made it through SVT free :).

On a bad note:

Miss K suddenly started having some off days a few weeks ago, she is a very active child full of mischeif on any normal day but a few weeks back she started having days here and there where she's listless, extra tired, begging to be held and snuggled, and has a huge lack of energy.  I'm used to a little girl who never sits still, but lately she has had a lot of days of curling up on the couch with her blanket and begging for a movie, her eyes say a lot about how she feels and during these times of listlessness her eyes say she feels off in some way.

I always pull out the stethoscope and my phone (with my Cardiograph app on it) and check her heart rate during these down times, my first thought when this all started was that she was experiencing SVT, I was quite wrong.  Usually during these odd moments her heart rate was below her normal range but not in a bad way, I just thought it was slow because she hadn't been active, that is until a week ago when I checked her heart rate to find her beating in the mid to low 50's.  Anything below 80 worries me with her, and until now she's never really dipped below the mid 90's, so 50's was scary.  I called the Cardiology nurse and asked her how low of a heart rate was too low, I let her know Miss K was in the mid to low 50's at the moment and I was a bit concerned.  She didn't seem too concerned herself though, which calmed me quite a bit, my main reason for calling was to ask Miss K's EP Cardiologist if he thought I should bring her in to see him at the 6 month mark or if he thought she was fine and we could wait a whole year like I had origionally planned.  The nurse was baffled by this question, I guess the charts in front of her showed Dr. P still wanted to see her every 2 months and I was 2 months late on fulfilling that request (I'm almost positive she was looking at Miss K's 2011 charts rather than 2012 and 13 charts), she refused to believe me when I told her we were on a 6 month schedule now and that I was given the OK to wait a year if I felt good about it.  I ended up hanging up with her strict instructions to call scheduling and get Miss K in for an appointment NOW.  I then called scheduling and told them Miss K needed to see Dr. P ASAP, they looked at her charts before bringing up the calendar and then the confusion began.  In their notes Dr. P had asked that we come in every 6 months, just like I told the nurse, they didn't want to schedule Miss K to come in until September.  I told them the nurse asked that we be seen ASAP so they told me they would call Dr. P themselves and ask him what he perferred we do.  I waited all afternoon and into the next morning to hear back from them, instead of scheduling calling me back I got a personal phone call from Dr. P himself.  This always worries me, Dr. P only calls me personally when there is something concerning he needs to talk with me about (except when we have lab work done and he's reporting the results, which he always does personally).  He was a bit concerned about the low heart rate, though he was speaking with me directly because he wanted to know when the last time we refilled her medications was, he wondered if we had been issued a bad bottle of Digoxin.  This was a good possibility since her listless moments started soon after we refilled her medications last.  He ruled out Digoxin toxicity over the phone when he read her chart and realized she has been on the same dose since last October, but he wanted to be 100% sure this was not the case so he asked me to bring her in for an EKG the next day as he was worried that she may be having some Bradycardic spells.  And knowing children like he does he told me he'd order a Holter Monitor to send us home with because EKG's only show what's going on at that moment and if the child is healthy and fine, or throwing a tantrum, we won't see what the issue is in other situations.

Somehow this was the perfect time to be requested to head down to PCMC.  We were already headed down there the next day to bring Baby Brother in for his first Urology visit (more on that below) thus making it easy for us to leave just an hour earlier and pop in at the Cardiology clinic for a quick visit with Dr. P.  Miss K just happened to be having one of her off days on this day, a good thing for Dr. P to see.  Things went downhill the minute we entered the clinic though (not in a bad medical way I assure you).  Miss K was terrified of the room, terrified of the exam table, terrified of the nurse, and even more terrified of the EKG machine and its "stickers" and wires.  When we laid her on the table she started screaming, the nurse had quite the struggle getting the stickers placed on her chest and belly as Miss K kicked and screamed through it.  We tried everything from snuggling her to encouraging her to touch and hold a sticker herself to putting EKG stickers on her baby doll (this only resulted in more terrified screams as she was afraid of what the stickers would do to her baby).  Finally the nurse decided she was part of the problem and she left the room for a minute, apparently this wasn't a big enough part of the issue as Miss K continued to scream and kick and still refused to calm down enough for us to get a good reading.  The nurse came back with a stuffed lamb and a sucker in hopes of calming Miss K down with bribery, it didn't work she refused both very adamantly.  I offered her snacks from the diaper bag but was also turned down, and she screamed harder when we got the bubbles out and blew a few for her.  We finally gave up and took what we could get, her heart rate was ranging from 120's to 140's during this tantrum.  Dr. P came in soon after the nurse printed a reading from the EKG machine and assured us he could not see any sign of Digoxin toxicity.  He felt she is probably fine and that maybe I was off with my counting of her heart rate or it was just some fluke that was nothing to worry about, he admitted though that maybe she has outgrown the PJRT just enough (but not completely) to maybe not need so much medication so we talked about lowering her dose on one or both the Propanolol and Digoxin after further evaluation.  But to ease my mind and to really be sure himself he still sent us home with a Holter Monitor fitted to Miss K.  She was not happy about that machine either, she screamed and kicked right out of my arms while the nurse was trying to get it all set up.  Somehow she forgot about it very quickly though and amazingly never really touched it through the 24 hours she had to wear it.

I sent the Holter Monitor back yesterday.  I have no idea how soon we'll hear from Dr. P with the results, Tomorrow is our state holiday (Pioneer Day) so unless UPS gets the packaged delivered today and Dr. P somehow gets a chance to read it today I will most likely not hear back from him until Thursday or Friday, this poses as a sort of problem though because we will be out of town camping up a canyon and won't have cell phone service so all I can do is hope he calls today or doesn't call us until next Monday.  I will keep you all updated with the results.

I promised an explanation about Baby Brother seeing Urology:

I mentioned in previous posts about Baby Brother being born with Hypospadias.  Our Pediatrician told us not to pursue it until he was nearly a year old because PCMC wouldn't let anyone do any surgery on a child younger than 12 months (unless it's life saving, of course).  I decided to go against him and called and made an appointment with Urology months ago, I knew it would be a long wait to get in and figured we should get the ball rolling now rather than later.  This past Friday was our clinic visit to see what the Urologist had to say about the matter.  We absolutely loved the guy, he was old and funny and full of information.  Turns out he much prefers to do the surgery at around 6 months old, and it's a mild, non invasive surgery so PCMC lets him do so.  We barely spoke with him 10 minutes when he was ushering us to his surgery nurse to schedule Baby Brother for his very first (and hopefully last) surgery.  He will be going in to have his Hypospadias corrected on September 6th.  To say I'm nervous would be an understatement.  I'm terrified of handing my baby over to be put under anesthesia and cut on.  The next 6 weeks are going to be nerve wracking for me, I'm going to have to try to stay busy to keep from thinking about it.

6 Months SVT Free!

I am amazed to get to post this update, I never thought we'd ever go 6 months SVT free.  It seems Miss K is on a roll!

Last week Miss K did have us a bit worried for a few days, she was a tiny bit listless, really tired (asking for naps 2-3 times a day and going to bed early only to sleep in past 10:00am) and just not acting right, she looked miserable through the eyes.  But she never ran a fever or had any symptoms of illness and her heart rate stayed slow and steady.  After her worst day I decided to give her until the next morning before calling someone, the plan being to call her Pediatrician and ask him what to do and then call Cardiology if advised.  She woke up that next morning acting and seemingly feeling fine though so I didn't make any phone calls and we decided she was OK.

This past weekend Big Brother got a nasty virus, the only symptoms being a very high fever (averaging 104), a headache and body aches and very, very tired.  Nothing else.  All we could do was hope Miss K and Baby Brother didn't get it!  Big Brother's fever broke about 48 hours after it started, the body aches and headache went away soon after but he still isn't feeling 100% and is taking a nap daily (he never naps anymore) something is still lingering.  We had hoped Miss K had gotten it first and passed it on to Big Brother, for all we knew her few off days last week could have been the same virus minus the fever.  Sadly Miss K started with the fever Monday afternoon, and all day she had been cranky and acting like she didn't feel well.  It was apparent she was getting the virus.  We did all we could to keep the fever down hoping to avoid the inevitable SVT caused by fever.  She hasn't felt well at all.  I'm thinking her PJRT and her heart medications are making it harder for her to kick this virus.  She has had a fever off and on for 3 days now and is still listless and tired, falling asleep at odd times of the day and in odd places.  Big Brother was over the fever and the worst parts of the virus within 48 hours.  We've been keeping an eye on her heart rate through this and amazingly she has done wonderful!  Even at the fever's highest point she has not had any SVT.  We are so proud of her!

Now Miss K has proven she can finally make it through a fever without SVT, YAY!  We're hoping this is a great sign.  I know we were given the OK to wait a year to see her EP Cardiologist if we felt she was doing great but I really think if she's still doing this great 6 months from the last visit I will take her in so we can talk about bringing her down on one or both medications :o).

Cardiology Visit

Today went quite well at the EP Cardiologist!  And he was kind enough to take some time to check Little D's heart as well for my own peace of mind :o).

Miss K first...

Still weighing in at 18 pounds even.  And has decided she hates the blood pressure cuff and the EKG "stickers" though she is totally fine with the doctors listening to her heart with a stethoscope lol.  Her EKG is perfectly normal.  Her heart rate was 110 BPM.  Blood pressure was a bit high but she was wiggling through the check so the assistant is sure it wasn't accurate.  The EP Cardiologist listened to her heart extra long today and diagnosed her with having a small murmur :o(, something we did not know before.  But he's not concerned mainly because her EKG is normal.  Now I am concerned though lol, my Mommy brain is working extra hard on it wondering if it's a genetic thing or if it was caused by medications or SVT episodes, etc., etc., etc.  As long as the EP Cardiologist is keeping an eye on her I may be able to relax though, and lucky for us I don't have the time to research it to a large extent and have "Dr. Google" scare me lol.  Miss K is doing great on her 3.2mL Propanolol 3 times a day and 1.2mL Digoxin twice a day.  We have seen no SVT episodes since just before Christmas **Knock on wood!** and the EP Cardiologist was happy to hear it, especially happy to hear it wasn't unexplained, that it was caused by a fever and dehydration and it was easy to break.  We haven't talked to him in person since before he prescribed Digoxin over the phone so today he talked a bit more in depth about his thoughts on that.  He said normally when a child is started on a medication like Amiodarone they are not able to put them on a beta blocker successfully, Miss K is a rare case and he is surprised we have been successful putting her on the Digoxin after taking her off of Amiodarone :o).  So the new plan is to keep her on her current medications and doses and wait and see what happens.  Little did I know this follow up schedule we've been following is not "normal" protocol for SVT patients, to us it is "normal" because it's all we know.  Today our EP Cardiologist told us he usually see's his SVT patients 2 months after initial diagnosis and then every 6 months until 18 months old and then he moves them to once a year until all is well.  Miss K went every 2 months from the day of diagnosis and wasn't moved to 6 month "status" until she was 13 months old, now at 19 months she's still at 6 month "status" unless I feel she is doing great and I'm not concerned about anything, in which case I can push her next appointment to a year.  So, other than her new murmur, Miss K is doing great with her PJRT :o).

Little D...

Birth weight was 7 pounds 4 ounces and length was 18 inches...he's now 5 weeks old and weighs 10 pounds 1 ounce and is 23.5 inches.  He's most definitely growing well, he has Big Brother and Miss K beat on the weight at this point as both of them took until 4-5 months old to hit 10 pounds lol.  We did not do an EKG, the EP Cardiologist did not feel it was necessary today, we did try to get a blood pressure but he wouldn't hold still so we never got a reading at all.  The EP Cardiologist listened to his heart for a good, long time and diagnosed him with a murmur as well :o(.  As of right now he feels it's a normal newborn murmur that he will most likely outgrow.  He does not want any follow up appointments with him, he just told me to ask the Pediatrician if he heard it at his 2 week check up and to ask him to keep a close eye on it himself, if the Pediatrician feels it's a complication he will send us to the Cardiologist in the future.

After hearing that two of my littles have a heart murmur I am concerned about Big Brother.  I wish I could have predicted this, I would have taken Big Brother into the exam room with me rather than leaving him with Grandma in the waiting area, this way the EP Cardiologist could have listened to his heart as well.  Now I plan to take Big Brother with me to Little D's 2 month well child exam and ask our Pediatrician to listen very well and make sure he doesn't hear anything.  Yes, I'm being paranoid Mommy here but I need to know that all 3 of my kiddos are OK.  On a lighter note here, we did have Big Brother checked out by the Pediatrician last fall when he told me his heart was "growling" at him and "beating faster", they even went as far as doing an EKG for my peace of mind and it came back normal, the Pediatrician decided it was more than likely Big Brother's Reflux rearing it's head again rather than anything to do with his heart.  At least we have had a normal EKG reading and I can feel that IF he has a murmur it's apparently not affecting him in any harmful way.  I will update when I get him in to be checked out.

Whew.  What a long day dragging 3 kids around all day, so glad I didn't try that adventure alone!  I asked my mom to come with and she ended up bringing my little sister so I had 4 extra hands and it was a very good thing, Grandma was able to help with Big Brother in the waiting area (my little sister's choice since she didn't feel comfortable waiting out there without an adult {she's only 13}) and my sister came to the exam room with me to help with the two kids, which was a huge help since it ended up being extremely chaotic WITH her help, I can't imagine how much harder it would have been with just me in there!  So glad the day is over, even with the new information and worries, at least we all made it through our first real adventure out of the house with 3 kids lol, not sure I want to do it again for quite a while.

Daddy has Influenza :o(

It's been a long 3 days for this Momma!  I.am.exhausted.  All I can do at this point is pray I can stay healthy through this!

Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose.  Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(.  On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home.  Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays.  Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).

Worse...Daddy came home feeling quite sick Monday evening.  He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat.  Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight.  I hoped this meant he would be just fine but I was beyond wrong.  He came home from the trip hours before quitting time and curled up on the couch to die.  I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can!  The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(.  So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were.  He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms.  It's amazing how one virus can cause every symptom in the book to happen all at once!  This morning found Daddy still on the couch, way too sick to go in to work.  We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(.  And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of.  I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!

Miss K woke up running a high fever of 101 this morning :o(.  She was miserable all day long with a constant fever that I have not been able to keep below 99.9.  She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well.  We can see in her eyes that she does not feel well at all.  And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today.  I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(.  On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o).  And she IS eating, she ate every meal today, even porked out on dinner like she was half starved.  Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well.  Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either!  Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing.  They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.

I have made no less than 4 trips to the grocery store in 2 days.  Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again.  Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.

I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them.  I literally mean every surface has been sprayed multiple times.  I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched.  I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched.  I have become the sanitizer Natzi!  But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been.  It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.

I think after all this is said and done I will need a vacation...alone.  "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband.  It get's tiring real fast.  Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute.  I may end up getting sick just because I'm being ran to my whits end!

HaPpY DaNcE!!!!

Miss K had a hard weekend.  She had a high fever for 3 days and was just miserable but had no other symptoms, we were clueless as to what she was fighting.  And as always, the fever caused SVT...twice.  We made it 2 weeks without SVT and we were so happy!  And then it ended with 2 episodes in 2 days caused by a fever.  I wasn't worried, didn't think I'd even count these episodes and certainly didn't plan on calling the EP Cardiologist to tell him about them.  But Saturday night Miss K had a suspicious lump appear on her leg, where she had recently gotten a vaccination shot.  I wasn't sure if it was her Chicken Pox Vaccine or the MMR Vaccine but seeing this made me quite sure that was the source of her fever for whatever reason.  We waited and watched Miss K through Saturday night and all day Sunday.  She happened to wake up Sunday morning fever free and feeling great!  But the lump was still there, bright red and suspicious looking.  Monday was much the same as Sunday but I decided to call her Pediatrician anyway, they got us in to see the physicians assistant early in the morning.  The PA was a bit concerned about the lump and the fever but when I told her about the SVT she grew the most concerned and opted to go chat with our pediatrician about what to do.  It turns out the fever and the red lump on Miss K's leg were related, it was a perfectly normal reaction to the MMR Vaccine and nothing to worry about.  But the pediatrician was very concerned about the SVT episodes.  He said that clearly the Digoxin was not working and that this weekend was a good trial run to let us know sooner, rather than later, that Miss K needed to be back on the Amiodarone ASAP before she caught a nasty virus.  Apparently there are a few really nasty cold and flu viruses going around town and he's seen way too many cases with extremely high fevers and horrible symptoms.  He was worried about Miss K dealing with actual symptoms of a virus as well as a fever and SVT on top of it all and predicted finding her hospitalized because of complications.  He ordered me to call the EP Cardiologist that day and tell him about our weekend.

So I worried.  And I called the EP Cardiologist as soon as we got home.  I also cried and stressed.  I was certain Miss K would be fine and that SVT with a fever was just her normal.  Something we can't control. Period.  But the pediatricians reaction had me doubting my instincts.

It took 2 days for the EP Cardiologist to get back with me.  He finally called me himself thank heavens.  His reaction:  Miss K is fine.  The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes.  The fever induced SVT means nothing to him.  He said it's to be expected with a PJRT child.  He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers.  He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all.  He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.

I cannot even begin to describe my feelings while I spoke to this wonderful man!  I instantly teared up hearing that he knew Miss K was fine.  It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.

I admit...I did a happy dance...a rather embarrassing happy dance ;o).  I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).

Here's to a long weekend with family and feasting, worry free!  I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!

Breakthrough SVT Log...

I have a feeling there's going to be a lot more SVT in the near future.  Rather than post and re-post about each and every one of them I'm just going to add them here as they happen, no worries I'll date them :o), this IS a journal for me as much as an update for all of you so keeping track is very important to me.

Friday, October 26:

Miss K had another SVT episode :o(.  We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week.  The SVT was, yet again, unexplained :o(.  We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique.  Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own.  I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs.  She just seems off to me, a bit out of sorts.  And she is normally crying for no apparent reason, just wining and moping around carrying her blanket.  She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this.  When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong.  I took her from him and just knew to check her heart.  She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM.  Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine.  This is turning into a once a week occurrence lately :o(.

Sunday, November 4:

Miss K had another SVT episode IN CHURCH!  And this time I was paying attention and figured something out...temper tantrums can cause SVT!  She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away.  She tried to throw a huge tantrum and got so worked up it just threw her into SVT.  I knew she was in it when she went from near tantrum screaming to painful crying :o(.  I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(.  She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time.  Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.

Friday, November 16:

Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now.  Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most.  I don't think I'm going to call in tonight's SVT episode though.  Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(.  Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that.  She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere.  We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT.  Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o).  I really hope this episode was truly caused by her fever.  I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering?  We're still on the lookout for more episodes though, we check her constantly throughout the day.  I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.

Saturday, November 17:

I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(.  We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor?  So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(.  He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(.  This makes me nervous.  I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me.  But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on.  I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever.  I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months.  Here's to praying I'm not back on here any time soon to report more :o(.  Keep praying with us that we can keep  her out of the hospital!

Thursday, November 22:

Yes, Thanksgiving day :o(.  Actually it was in the evening.  We were at my parents for the holiday.  Miss K decided to throw a temper tantrum for her Grandma and it caused SVT.  It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode.  So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast.  I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode.  The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT.  It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.

Tuesday, November 27:

Another one :o(.  And we have no idea why.  We also have no idea when she went into it.  I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything.  So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT.  Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held.  We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does.  I put my ear to her chest and heard the quick beats of SVT :o(.  She came out of it instantly with the "bear down" physical maneuver.  I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently.  Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment.  I'll keep everyone updated on what we end up deciding.  Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.

Saturday, December 22:

We very nearly made it 1 month episode free!  But this illness Miss K has ruined it for us.  She did so well for the first 3 days but suddenly couldn't handle it any longer.  This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent.  Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(.  This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does.  So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out.  I hate that I am too sick to take her myself.  I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation.  I only hope it all goes well!  One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him!  I will update on what the Doctor says when Daddy and Miss K get back...

*Update:  Daddy and Miss K came back with a prescription for Amoxicillin for Miss K.  Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain.  The doctor also told Daddy that Miss K is quite dehydrated :o(.  We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it.  I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(.  So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her.  Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well.  So now our drug cocktail is a very long list daily for the next 10 days!  Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed.  Poor kid is stuck taking medications all day long!  Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).