6 Month Cardiology Checkup

I can't believe it's already been 6 months since our last visit with the EP Cardiologist.  Time is sure flying.

Can you believe it was 2 YEARS in December since Miss K's last known SVT?!?  We didn't celebrate it yet, it's been way too crazy the last few months and we completely forgot :(, hoping to have a cake for her soon though :).

First off the appointment went very well.  Miss K climbed right up on the scale without complaint, even stood perfectly for her height measurement.  And when it came to getting the EKG done she completely shocked me!  Just last appointment, 6 months ago, she screamed and cried about having the "stickers" put on her and I had to hold her while we did the whole EKG.  Today I asked her if we could put the "stickers" on her chest and she said "yes!", she let me put her on the exam table without any complaint and she laid right down and lifted her shirt up.  She was so good, she held perfectly still for the EKG, she complained that the blood pressure cuff hurt her, which is not normal, but I think the nurse had it on a bit too tight, and she didn't like having the stickers taken off by us, she insisted on doing it herself and that was just fine, she pulled all 13 of them off all on her own without tears.

I even got to take a quick picture of Miss K today, something not likely to happen in the past :)

The EP Cardiologist came in and said everything on her charts looks great.  He listened to her heart and said she sounded wonderful.  He was very happy with her today.

Having 3 kids in the office together makes talking very hard so I didn't get to really ask a lot of info about Miss K but I did get a few things clarified.  The first thing he said was that she hadn't gained enough weight to worry about medication dosing, I told him we were going on 2.5 years on the same doses and just over 2 years SVT free and we both agreed this is a great sign and that there is no reason to change her medications.  My only regret is that I didn't get to ask him why we couldn't try lowering them, or even try dropping the Digoxin, he didn't even go the direction of mentioning it himself which makes me think the PJRT must still be showing it's ugly self on her EKG, but I didn't get to ask him if this was the case with all the chaos of my 3 kiddos running around the room :(.  I did get to ask him my main question.  I have been wondering about the Catheter Ablation with Miss K nearing age 4.  In the past he has mentioned she'd likely have one around age 5, we're so very close to that age and I couldn't stand not asking him about it a little more in depth.  So we talked about when and why to do one.  He said he has done them on kiddo's Miss K's tiny size but only in dire circumstances where it was deemed quite necessary.  That's just fine with me, I am most definitely not asking him to do one now.  He said he really wants her to weigh 15 kilograms (about 40 pounds) and be age 5 or older.  He actually mentioned that height is more a factor to look at than weight, so say if a 5 year old is not 40 pounds but she is at average height or taller for a 5 year old then an ablation would be more than OK to consider.  But Miss K is so teeny tiny, she's most definitely not going to be 40 pounds around age 5, and going off her current height it's very unlikely she'll be "average" at that age either, she's very short compared to her older brother when he was her age (i.e. when Big Brother was 3.5 years old he had to have a 4T size pant to accommodate his length otherwise he'd have "floods" or "high water jeans"...Miss K is age 3.5 and she is still in a 2T pant because 3T are WAY too long).  Doing an ablation on a teeny tiny child presents risks, mostly a huge risk of not getting a vessel or two ablated because they were too small to see, thus guaranteeing a return of the SVT episodes sooner or later (likely sooner), but if we wait until she's quite a bit bigger he'll be much more likely to successfully get every little vessel that is causing the SVT's and thus preventing further SVT episodes at all in her future.

So, we keep up with the medications as they are.  No plans for an ablation in the immediate future, the EP Cardiologist says around age 7 may be a better estimate for Miss K.

And the best news?!  He officially said "I don't want to see you for a year!", the first time he's ever said those words :).  We don't have to go back in 6 months :).  This is a huge step for Miss K, we've been waiting for him to say "don't come back for a year" rather than "come back in 6 months, unless you think she's doing OK then you can wait a year".  We're so happy to hear this :).

MRI Results...

I'm going to write about a lot of our experience only because I want it recorded for my own benefits, if you wish to skip to the results feel free, I won't be bothered by it, in fact I'll never even know lol.

Miss K woke up cranky today, she did not want to be up, she wanted to sleep.  I can't say that I blame her, I wanted to stay in bed as well ;).  She couldn't eat solid foods after 3:00am, we kept her up the night before until 10:30pm trying to get her to eat, eat, eat.  Truth is she's not a snacker, she prefers 3 meals and that's it, so getting her to eat until 10:30 was near impossible.  She was allowed clear fluids and Jell-O until 9:00am so her breakfast was Jell-O jigglers and apple juice...it didn't go over well at all, not that she was mad at what I was feeding her, just that she is not a breakfast kind of kid, she never eats more than a tiny bit each morning and getting that much in her is tough.  She had a few tiny bites of the Jell-O then played with it, can't blame her there either, Jell-O jigglers are fun to play with ;).

We arrived at Primary Children's Hospital right on time.  Miss K was just great with the pulse ox and the blood pressure cuff, she's used to these and didn't mind them at all.  The nurse wanted to use an under the arm thermometer, Miss K wasn't having that though!  The nurse suggested under the tongue instead and Miss K opened right up and allowed that for some odd reason.  Next comes the IV...Miss K knows exactly what those are, she knew immediately what we were doing the second we tried "assuming the position", so to speak.  A lot of violent kicking and screaming, it took 3 of us to hold her, I had her chest to chest with me, both of her arms tucked under each of mine with one nurse behind me finding the vein, one in front of me holding Miss K's arm, me squeezing as tight as I dared and Daddy holding her legs down because, darn, those little legs are strong!  She was using them to push away from us all and doing a pretty darn good job of it!  So much struggling commenced that it took almost 10 minutes just to get her hand properly prepped and the vein raised, then another 5 or more minutes getting the IV in, and because she was already worked up and ticked off at us all she kept screaming and struggling through the tape being placed as well.  Once we were done they brought a treasure chest and let her choose a prize, the only girl toddler friendly prize in there was a Cinderella puzzle, thank heavens she was thrilled with it...Note to self:  find some great little girl toys and donate them to PCH for their prize boxes...

IV in and ready and we're taken back for the MRI.  They had me snuggle Miss K while they pushed the sedation medication through her IV, they had to double check her charts and make sure to use a certain medication though because their usual medication interacts very badly with Digoxin.  Miss K fought the sedation hard, once we thought she was out she started thrashing around, we got her settled and assumed she would be fine and then I realized there was a safety pin in her pants (yes, she's tiny, every pair of pants she has that isn't adjustable waist must be safety pinned, or taken in with sewing, so they don't fall off of her non existent hips and bottom), I majorly disturbed her removing the pin from under her back :(, she wouldn't calm again after that so the nurse had to push another medication called Versed, this one knocked her out in seconds and she didn't even twitch.  The nurse assured us Miss K was completely fine, she would watch her 100% of the time, but the MRI was going to take 30 minutes or more and after that we would be stuck in recovery with Miss K for another 2 hours so she pretty much forced us out of there and commanded we go get some lunch so we'd be better ready for the long wait later.  I very reluctantly left my baby in their, hopefully, very capable hands and we ran down to the cafeteria for some food...wow, can I just say "flood of memories"?!  I almost couldn't handle that cafeteria and it's food today, every terrible memory from 3 years ago came back to haunt me down there.

We made it back into the MRI recovery room just as they had gotten Miss K settled in there.  They wanted her to sleep at least 2 hours straight to make coming out of the sedation a bit more pleasant.  Lucky for all of us it was Miss K's normal naptime at that point and she was more than happy to stay asleep, in fact she slept soundly without a stir while the little girl right next to us, her bed was touching my shoulder, was screaming at the top of her lungs and putting up a huge fuss about waking up from her sedation, it was so bad the nurse was practically begging the parents to take the little girl home, she was sure their child was just fine and would be better in familiar surroundings but the parents were not so sure and just stuck around, I know everyone in there was very relieved when they finally left after over an hour of listening to that sweet girl scream.

Miss K slept the full 2 hours just great, and amazingly she woke up quite easily and very happy, in fact she was quite goofy and out of her wits and it was a bit entertaining as well as unsettling, it's not fun for a mom to see her 3 year old act so out of sorts, even if she's happy doing it.  Miss K did great, she ate a whole popsicle on her own, this is not normal at all, she hates cold things and normally won't touch a popsicle.  She also ate cereal for the nurse and drank juice just great.  We were released quite quickly with our only instruction being never to leave her alone in the next 24 hours and never to leave her with any siblings or sitters for 24 hours.

Miss K started her screaming and thrashing as we got into the car, she did this for about 20 minutes, constant screaming and thrashing about in her carseat, we couldn't calm her no matter what we did.  But after 20 minutes she decided to eat more cereal and fell asleep while chewing (it's OK, I watched her close, she did not choke), she slept the rest of the way home.  Since getting home she has been very unbalanced, she can't walk straight no matter how hard she tries, and she's still acting quite loopy, doing silly things and acting very crazy.  She's also very visibly tired and should sleep easily tonight.  Otherwise she's doing fine, heart rate has stayed perfect from beginning to now.  We did have another bad parent moment today and completely forgot to give her her afternoon Propranolol :(, but I don't feel it's a bad thing with all the sedation medications in her that are slowing her heart rate.

Before results I will update a tiny bit about her past week.  Last Wednesday Miss K started taking Cyproheptadine for her migraines.  They had us start out at 1/2 dose for a week to get her body used to it then we went up to a full dose, in the very short week of just 1/2 a dose I already noticed a HUGE improvement in Miss K.  She only complained of her head hurting just 2 days and both times were first thing in the morning before even getting out of bed so I'm not sure it was even migraines but rather waking up making her feel a bit off, after breakfast each day she never complained of her head again.  Miss K's comprehension and speech has changed quite a bit in the past week as well, she's a lot more attentive and seems to understand more and she is a lot happier and a lot more active.  I feel terrible realizing that her headaches were more than I even could comprehend, from the way she acts they must have been pretty constant and pretty debilitating :(.  I'm still leery about the medication, I really don't like giving my baby girl medications and adding one more makes me nervous, but the outcome already has me thinking this is a really good thing.

Our Pediatric Neurologist is just as awesome as our Electro Physiologist!  She received the MRI scan within just a few hours of it happening and she called me barely an hour after we left the hospital...frustrating enough my phone decided not to ring at that moment and I missed her call, we were left stressing over results until after 5:00pm, 2 hours later, before she finally had another moment to call me back.  The MRI showed no reason for the migraines and no reason for seizures, also no seizure activity at all.  Both these things are GREAT news and really what we wanted to hear...but now we're left to wonder what in the world is causing Miss K's migraines?  Also the MRI revealed a very interesting find, not life threatening and not debilitating in any way present or future, just interesting, as the Neurologist says.  Miss K has an old Stroke in her brain, apparently it is very old, the Neurologist says it happened when Miss K was a tiny baby and that she very strongly feels it happened during Miss K's 48 hour long SVT episode that we were unable to break during her PICU stay.  It makes sense, I can't imagine that episode NOT causing some sort of damage in her little body.  This does bother me, a lot more than I've let on thus far, a Stroke is not something you want to hear your child has had for whatever reason.  But the Neurologist was very reassuring that it is not anything to worry about.

And there we have it.  Miss K is having migraines, it's apparent she really is, after seeing such great results from her migraine medication.  But there is no apparent cause for the migraines, we're just left to wonder and treat.

Thank you, everyone, for you love and support and prayers today, they were most definitely felt.  Somehow I was a lot more calm than I thought I ever could be today, I strongly feel it was all your prayers, thank you.

Neurology Report and Speech Therapy

We saw the Neurologist today.  I didn't recognize the name, and at first didn't know her face but then she said "Hi!  It's nice to see you guys again!", uuuummmmm, "again?" I said, I was so confused!  Apparently this Neurologist is the one who was on Miss K's case in Primary Children's during her long stay as an infant.  After talking for a while I started to recognize her face and remembered her just a tiny bit.

So, the news hasn't changed much.  Yes Miss K is likely having migraines.  At first it was a "no" we don't need to do any testing unless Mom wants it, and my answer was "no".  She was just as baffled about the episode in July as the rest of us are but had done her research in the last week knowing Miss K was coming in.

We got to talking and she asked more and more in depth questions about Miss K and her overall personality.

I talked about her eating issues...Miss K doesn't eat.  At meal times she constantly moves around until we give up and buckle her into her booster seat, she doesn't put any food into her mouth, we have to instruct her through the whole eating process and it takes an hour minimum to get a somewhat OK amount of food into her, what do I mean "instruct?", exactly that, every step:  "(Miss K) pick up some food, now put it in your mouth NOW", all said VERY slowly, VERY pronounced, each word said very clearly and separately.  If we don't instruct her she will sit there and never touch her food, no matter how hungry she is.  It's clearly not for attention as we've tried not doing it and she'll go days without more than a bite to eat each day, we've tried giving all 3 kids the same amount of positive attention at the table, keeping the negative out of the picture, so that she doesn't feel we're not paying attention to her enough, we've tried excusing everyone from the table and leaving her there longer without anyone to distract and she touches nothing on her plate for up to 30 minutes before we give up on her and let her get down as well.  She's not a snacker, she never has been, no matter how hungry she is she doesn't snack.

I talked about her slow thought process...Miss K doesn't understand most directions and the words "no" and "stop" when she's in trouble do absolutely nothing, no amount of loving guidance gets us anywhere with her, every love and logic thing we've tried has gone past her without even pausing, when we need to get the point across it takes 4-5 times of telling her "no" or "stop" until we get into her face and make her look us in the eye and VERY firmly, showing how upset we are with facial expression, telling her "NO!" or "STOP!" before we suddenly see a light bulb turn on in her eyes like "Ooooohhhh!  Mommy said no!" and then she quits.  Every instruction she is given has to be done very slowly with her looking us directly in the eye and even then she doesn't get half of it.  She's very slow to process things she's told.

I talked about her speech...Miss K is very hard to understand.  We understand her 21 month old brother clear as a bell but not Miss K at all.  Her Pediatrician said if 3/4 strangers can't understand her then she likely needs speech therapy.  Well, more than 3/4 FAMILY can't understand her let alone strangers.  Simple requests from her for some things are understandable to Mommy and Daddy but not clear at all.  When she tries to tell us a story, like what she did at Preschool, it's a jabbering mess that she repeats over and over like a broken record until she thinks she's told a great story, not one word understood by the listener, even if it's Mommy or Daddy.

The Neurologist changed her mind about the testing after this conversation.  She thinks we should do an MRI, she thinks it will help to know how Miss K's brain works.  She said after the MRI we might do some cognitive testing as well.

The plan of action after today is for the Neurologist to contact our EP Cardiologist and get his permission to do an MRI, because it must be sedated and that can be dangerous for Miss K's heart rate so we have to make sure her EP Cardiologist feels comfortable with us having it done, if he does not clear it then we will just skip it, it won't hurt anything it will only help to have an MRI.  Secondly we are putting Miss K on a daily anti migraine medication, it hasn't been prescribed yet only because, again, we have to clear it with her EP Cardiologist and the Pharmacist, make sure it will be OK to give with the Propranolol and Digoxin as well as be OK for her heart rate.

Also, while I'm updating, we have started the process for speech therapy.  Some think age 3 is way too young to even worry about it.  It's not too young, it's not too early, it's not pushing Miss K to learn faster than she needs to, blah, blah, blah, blah.  The Dr.'s say she's OK if she doesn't qualify for it, or if I prefer she not take it, it's not important so, no, it's not the Dr.'s or any teacher trying to push it on me because kids are being pushed too hard too soon.  I made the choice to see if she even qualifies for a number of reasons.

Number 1: I cannot understand her, half the time I cannot even guess what she's trying to say and it's frustrating for me to not be able to help her, it's frustrating for her to have nobody understand her.  When she asks me for something..."Mommy, I want a shiosay"...I ask her to repeat it, and apologize for not understanding her, about 5 minutes later she's repeated it over and over again and can't say it any other way and I absolutely cannot figure out what she's asking for so I end up saying "I'm so sorry baby, I can't understand what you're asking for, I'm going to have to say 'no'", I want to cry, she wants to cry, and we end in a heap of hugs :(, this is a daily occurrence. 

Number 2 I would rather her start speech therapy now while she's young and still learning, her way of speech is not ingrained in her brain, she's not quite used to it yet so it's not as hard to change it, and I'd much rather have her either done with speech therapy or already in it and getting help when she starts Kindergarten, I really don't want her to start Kindergarten having been only helped at home and be told that she needs speech therapy, which may or may not happen but I'd much rather avoid it however possible. 

Number 3 speech therapy through the school is free, so why not do it if she qualifies?  I won't pay for a private therapist, if she doesn't qualify we'll just keep working on it at home and try again next year if I feel she still needs it. 

As of right now we've started the process with the hearing and vision specialist, she passed the hearing and vision part with flying colors, even impressed the specialist.  The speech part she was right on the border, a score of 18 is allowable at age 3 and she got exactly 18, which doesn't always happen, as far as her understanding speech when being spoken to and following directions goes the specialist said she is behind developmentally and he said even though she scored an 18 she is really behind in her speech.  From that round of testing the verdict was it can go either way, she has two more people to see and test with and those tests can easily tip the scale either direction.  We see the next specialist for testing next week.

We have a lot going on.  As soon as Miss K's EP Cardiologist is contacted we will know what to do and when.  I'll keep updated as I can.

A Cardiology Visit

We visited with Miss K's EP Cardiologist yesterday for her regular 6 month check up.  It actually went really well!  Miss K didn't cry, she was a bit cranky from a long day and not much of a nap to speak of, but otherwise fairly cooperative.  She let us do the EKG without a fuss and it read normal for her as always.  Our Cardiologist was impressed with her, he could still hear her murmur we found last year but still is not concerned about it.  He also said she has not gained enough weight for a medication adjustment, he's not surprised with her lack of gain and advised me that between now and age 5 she likely won't gain more than 4-5 pounds, if she even gains at all, for the most part this slow weight gain is normal for the age, Miss K is just unique in that she's so tiny to begin with.  She is barely tipping the scales at 23 pounds even, she's about 34 1/2 inches tall.  While I, and others, are hoping for a good weight gain from her in the next 6 months to a year her Cardiologist is content having her stay in this weight area to avid medication adjustments lol, it's kind of a "rock and a hard spot" sort of thing, we want her to grow and gain weight like she should but we don't want to have to give her more medications.

I asked about Miss K's little episode a few weeks ago, (here), he was concerned about the symptoms BUT he swears they are not cardiac related in any way.  He said from a Cardiology standpoint there is nothing related to the heart or it's function that would cause very slow heart rate, very low body temperature and profuse sweating all together like Miss K was that day.  He assured me without a doubt that her symptoms were not the result of an SVT episode, he's never known, read about, or heard of an SVT episode causing these symptoms all together, even the most severe episodes.  He speculated that a medication overdose of either of her medications could possibly cause this reaction BUT Daddy and I are 100%, without any doubt at all, sure that we did not overdose her medications the night before, nor did we issue them too early (to close to her last dose).  He said the only thing he knows of that causes these symptoms all together is the "D" word, a word he didn't want to even mention, I'm sure most anyone can figure out what word that is.  It scared me.  It has him worried.  But it's nothing he can diagnose, he can't even refer us to someone who can diagnose it because he's never heard of it happening except in the case of the "D" word.  We're back to square one figuring that day out.  I don't know if I want to just leave it be and wait for it to happen again or if I want to further investigate, I don't even know where to begin to look for information about it.

Otherwise, Miss K looks and sounds great for her "normal" from a Cardiology stand point.  We're to see if we can go a whole 6 months without needing a visit, if she doesn't gain weight in the next 6 months then we are to wait a year to see him, he doesn't see any reason to see her unless she gains or is having frequent SVT.  We continue to give her 3.2mL Propranolol 3 times a day and 1.2mL Digoxin twice a day.

Before our appointment we had the opportunity to meet and play with one of Miss K's heart sisters, Brielle!  It is such a blessing to know other kiddos with PJRT but an even bigger blessing to know one that lives close enough to meet and plan dates with!  This was our first time we both were available and I was driving up their direction anyway for our Cardiology appointment so we decided to take advantage.  We met up at Utah's Thanksgiving Pointe and explored the Dinosaur Museum together.  It was so much fun and so great to get the girls together.  Brielle is such an adorable little girl and her mama is a real sweetheart, I love how much we have in common.  I hope we get to see each other more often! 

Another ER Visit :(

A few weeks ago (June 3) we found ourselves back in the ER with Miss K . She caught a tummy bug over the weekend that just didn't want to leave.  It started with vomiting most of the day Saturday, in fear of another ER visit for dehydration I was trying anything and everything I could think of to get fluids in her and get them to stay but without fail every time she drank ANYTHING she puked, until I got a strange idea to try my breastmilk, I happen to have some in the freezer that I actually thought of tossing out during our move a few weeks ago but for some reason couldn't bring myself to do so just yet knowing it was still perfectly good.  The idea to try breastmilk came because just a few days before Baby Brother had gotten the same bug and the only thing he was keeping down was breastmilk, I doubted Miss K would be OK with it but amazingly she drank it, and drank some more and didn't puke again.  But the diarrhea did not stop and she had it for DAYS.  Even though she's been drinking 30+ oz fluids daily she still got dehydrated. Since we are between Pediatricians with having just moved out of town I called the closest pediatrician's office recommended by friends only to be told every ped and his/her nurse in the state was at a conference until that afternoon! They got her an appt for 3pm but I felt she needed to be seen sooner when she started loosing control of her whole body, she couldn't focus, couldn't pick stuff up, and could not walk without collapsing, she couldn't understand why her body wouldn't work and kept trying to move and leave the chair only to fall to the floor. It had me worried so I loaded Miss K into the car and met Daddy at the ER only to pull a much more aware and seemingly fine Miss K from her carseat. The ER nurses deliberated and couldn't decide if we needed admittance or if she could wait til her later appointment, we called our old pediatrician and new pediatrician only to be told there was nobody there to give us advice. In the end they decided admittance was best considering there were no Pediatricians available for the morning. Turns out she was dehydrated enough they couldn't even draw blood, it took 3 tries with 3 different nurses and then they called in the Life Flight team, I guess because they are great with tiny, dehydrated veins, the Life Flight guys got the vein on the first try but by that point my poor, sweet baby was so traumatized , she went into her "shut down" mode and refused to look at or talk to anyone, myself included. They gave her IV fluids, took urine and stool samples and blood, all results came back fine.

A little story here:  See her right hand?  She is holding an Oreo.  She wouldn't let us take it from her as she was dozing off so we gave up...5 minutes or so into her snooze Daddy tried taking it and she screamed "NO! MY cookie!" but didn't wake up, she slept with that cookie until we left the ER lol.

I learned that Digoxin levels in the blood can come back as "normal parameters" but a person can still be suffering from toxicity.  I learned that you can see the Digoxin actually working on an EKG and that that's more accurate than a blood test.  Apparently at the time of the EKG and blood test both came back as normal.  I also learned that a person taking Digoxin should never be allowed to get dehyrdrated to any extent because dehydration can cause Digoxin toxicity, I'm not happy that I never knew this, I can't find it anywhere on the internet and her EP Cardiolgist never has mentioned it, something I will be asking him about at our next 6 month check up.  The ER doctor explained that her extreme behavior during dehydration is likely because of her Digoxin, when she's out of bodily fluids the Digoxin can do some crazy stuff to the brain and body and he told us ANY time she gets dehydrated and acts like she did this time that we need to take her in to the ER immediately.

What we don't know is why Miss K gets dehydrated so easily and so quickly.  This year we've learned that tummy bugs do not bode well for Miss K, it is something to be avoided if at all possible.  It's strange that since she hit toddler hood and started handling fevers and cold viruses so well despite her PJRT I thought we were in the clear for school coming up, no more worries about other kids being sick around her, but now I have to stress about stomach bugs, I have to do all I can to keep her from getting them since every time she does catch one we end up in the ER.

It took us almost a week to get Miss K back up to healthy again.  I ended up taking her in for a follow up visit with a new pediatrician, he was pretty good, I think I'll give him another chance before I decide whether we need to try someone else.  He gave me a lot better information about "curing" diarrhea than the ER did, we ended up putting Miss K on a high strength probiotic twice a day for a week, also he advised me to get her back to drinking milk for the fats but it needed to be lactose free so that it was easier to digest, Miss K wasn't a fan of the lactose free milk but she drank enough of it to satisfy.  We did finally get her eating well again, actually better than before she got sick, and she got back on track drinking lots of fluids, but it took us over a week to do so.

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 ;) ;).

Hair Loss

About 7 or 8 months ago I remember reading a post by a SVT mom talking about hair loss being linked with the use of Propranolol.  I never thought much of it since Miss K wasn't having hair loss issues, I felt bad for her but didn't think to remember that post.

Fast forward about 4 months and you find me crying over a clump of Miss K's hair.  I was taking a hair band out of her hair, I'm always gentle about this and the hair band was a soft no-pull one, but on this night a chunk of Miss K's hair came out with it.  It was perfect, it looked as though I had taken a pair of scissors and cut the hair in a perfect square.  There I was holding a lock of precious, sweet hair.

Fast forward another 2 or 3 months and you find me constantly dealing with hand fulls of hair each time I comb Miss K's hair, no matter if it is soft and tangle free or completely riddled with tangles and knots, no matter if it is wet or dry, Miss K's hair is coming out in clumps.  She has a bald spot in the front that I thought was just genetics, except that there was hair there one day and then the next there wasn't, but I didn't really notice how fast it had gone nor did I really remember there being hair there at all, now looking back at pictures I see that there was hair there at one time and there's really no reason for her not to have hair there now.

I finally realized something was up.  I got on all the facebook support pages I follow and asked around about hair loss being connected with either Propranolol or Digoxin, or maybe even a delayed side effect from Amiodarone, a long shot I know but I have been desperate to find a reason for her hair loss.  Most of the mom's that answered had never heard of hair loss being connected to any of the three medications.  But a choice few had heard of a link and were willing to share.  Turns out I found the mom who mentioned hair loss and Propranolol months ago, she verified that her daughter had a hair loss problem off and on while taking the Propranolol, she couldn't tell why some months were better than others but she could confirm that her daughter's Cardiologist admitted that hair loss is a side effect of Propranolol, uncommon and not well known but still a side effect.  Another mom commented that her daughter's Cardiologist also mentioned hair loss as a side effect of Prorpanolol.  After reading these comments I dug through some more websites looking for this side effect to be noted somewhere and, amazingly, I finally found it, a site that has hair loss listed as uncommon and not well known but it is a side effect of Propranolol.

I will, of course, be asking our own EP Cardiologist and our Pediatrician, and maybe even our Pharmacist, just to make sure this is really what's going on with Miss K.  I will update when I can.  I am almost sure the Propranolol is the cause but I also know that low Iron and a lack of certain vitamins and minerals can cause hair loss as well and seeing that Miss K is not the greatest little eater these could certainly be part of the cause.

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.

6 Month Check Up

Miss K saw Cardiology today. Getting an EKG wasn't as bad as last time, I was way more prepared for her reaction lol, I took her favorite blanket and beloved "Bow" the elephant in with us to help calm her and this times nurse let me hold her while we put the "stickers" on, hooked her all up and even let me keep holding her through the EKG (the last nurse swore it would mess with the reading and wouldn't let me hold her), we wrapped her in her blanket and put stickers on "Bow" and she calmed right down for the whole reading, got a somewhat normal heart rate for her EP Cardiologist to look at . Since we just saw him a month ago for her Bradycardia scare today wasn't really necessary but he failed to mention that until he realized who he was seeing lol, he felt bad for having us come in but I was happy to do it since last time was a fly by just for an EKG reading we didn't get to really talk with him, this time I took as much of his time as I could and we really talked .

Miss K is doing great according to her EP Cardiologist.  He feels that since she hasn't had any known SVT since December that she may very well have outgrown her PJRT! But he also doesn't want to push our luck and is going to keep her on her Digoxin and Propanolol until she's 3 years before trying any lowering of doses or stopping all together just in case she isn't having SVT solely because of lack of weight gain, we will see if this is the case in a year IF she isn't like her big brother and instead gains some more weight in the next year lol. Her murmur that we just found in March is still there but he says it's not a hole, it's just a different sound in her heart and over 80% people have this different sound and he's sure it's harmless because all her past Echo's have shown a perfect structure and no defect.

Some readers tend to take news like this out of perspective.  That last paragraph does not mean Miss K is now "OK", it by far does not mean that she HAS outgrown her PJRT nor does it mean we are out of the danger zone at all.  SVT free for over 1 year can still just mean her medications are working, a lot of kids who go that long have been taken off of their medications and have had severe SVT resulting within days or weeks of the medications leaving their systems.  Miss K has only gone 8 months SVT free, we MUST take into consideration that she has barely gained just 1 pound since last October when we started the Digoxin and adjusted her Propanolol dose.  There is a very great chance that she has been SVT free this long only because she has not gained much weight.  I am completely OK with following the EP Cardiologists recommendation to keep Miss K on both medications at their current doses until she is 3, it seems a bit reckless to start weaning off of either medication right now, we need to be careful with this process and take it slowly and one step at a time.  We also need to remember that PJRT is not a temporary condition, even if a child is considered to have outgrown it it has a very high potential of presenting itself again later in teen years or as an adult.  This is a serious heart condition that is NOT going to just go away forever, we can always hope that it will but we MUST remember that it is very unlikely.

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.

Bradycardic Episodes Update...

We finally got a call from Miss K's EP Cardiologist, it took a few days because of our state holiday and then I was out of town and outside of mobile service so I didn't get to speak with him directly, I just received the message this afternoon.  The Holter Monitor reading came in and he looked through it thoroughly, Miss K does indeed drop her heart rate to the low 50's very occasionally but never for more than a second or so, he said the longest her heart rate was in the 50's was about 1.3 seconds and her average heart rate was 92 BPM.  This is all good, everything he expects to see in a child taking 2 Beta Blockers.

I am relieved to hear that she is OK and no SVT was caught with the monitor either, such a huge relief!

As of right now she is to stay on the same 3.2 mL 3x daily Propanolol and 1.2 mL 2x daily Digoxin.  She will be seeing him in September for a follow up, I am a bit disappointed to be taking her in since I had hoped to stay away from a visit for a year but her EP Cardiologist feels he should see her at the 6 month mark to see how things are going and talk about future medication changes.  He likes to have a game plan and it's time to talk about what we need to do in the future.

On a side note, last week with all the craziness of packing to go on a family camping trip I completely forgot to issue Miss K's afternoon dose of Propanolol Tuesday.  We waited on egg shells the next few days, while camping, expecting an SVT episode because she has always had SVT after skipping a dose, I was terrified of being out in the middle of nowhere with no cell phone service and 30 minutes from the nearest hospital knowing that we had skipped a dose and SVT was possibly inevitable.  We checked her heart rate constantly throughout the week and weekend and were extremely shocked to never catch any SVT!  I am amazed at how far our sweet little girl has come.  She is doing so great and kicking her PJRT in the butt :).

And while camping I noticed at least 1 new molar coming in, this means the cause of her tired moments and off times was most likely teething, I'm so glad to have found a reason for her to have been acting out of sorts!

Our dirty little princess enjoying playing in the dirt while camping this past weekend.

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.

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.

18 Month Well Exam

Miss K had her 18 month well child check-up on February 15, yes that was about 2 weeks ago and I am very late updating about it lol.  Having a newborn plus 2 kids under age 4 has been crazy busy around here!

Miss K is weighing in at a tiny 18 pounds even and is just over 36 inches tall.  She may not weigh much but she sure looks pudgy!  She has rolls and dimples that Big Brother never had lol.  The Pediatrician was impressed with her, he's not a bit concerned with her weight, she's as healthy as can be (aside from her PJRT) and he doesn't feel there's any problem as of right now.  Everything else checked out perfectly.  And speaking of that little heart, thus far we have made it 2 months SVT free **Knock on wood** (lol).  She's had missed or 1/2 doses of her Propanolol a few times due to spitting it out for some odd reason, she's usually really great about swallowing it but on some rare occasions she will dribble it down her chin loosing some or all of the dose.  But these missed doses have not caused SVT (yay!).  She has also had crying fits with breath holding that we were sure would cause an episode but, thankfully, they have not yet.  And she loves to throw major tantrums, she kicks, screams, holds her breath, and throws herself down on the floor slamming her head down with all her body weight (thus making the tantrum worse because then she is also injured and screaming harder from that, go figure!), these tantrums always make us nervous as she gets herself so worked up her heart is racing and she is flushed from the exertion but her little heart keeps a normal rhythm never going much over 120 BPM during these fits.

Miss K has been on the same dosage of her medications since October 2012, nearly 6 months of no medication adjustments is so good for her!  But we have to keep in mind that she hasn't gained significant weight since the last medication adjustment so that's most likely the biggest factor in not needing more of one or the other.  So as of right now Miss K is taking 3mL Propanolol 3 times daily and 1.2mL Digoxin twice daily.

Miss K's next Cardiology appointment is in 1 week, March 12.  I'm excited to hear how the EP Cardiologist feels she is doing.  I am tempted to ask for a Holter monitor to see if she is having episodes we don't know about, I swear there have been a few times I have checked her heart with my hand or ear and it was surely in SVT but within the time it takes to grab a stethoscope her heart rate has changed and I have found that it is beating normal and fine, I really wonder if she is having episodes we don't catch and is converting out of them on her own, this would be a huge miracle for her since she has never in her 18 months of life converted out of SVT without a Physical Maneuver.  But I hope I am very wrong, all I ever hope for is for her to truly be SVT free and eventually outgrow her PJRT!

Somehow we have been able to all stay healthy since our bout of the Flu back in December, again **knock on wood**!  I hope we can all keep up this good health, it's nearly spring so flu and cold season should be coming to an end real soon.  With a newborn in the house I have been extra cautious, I am determined to keep him healthy!  RSV has been so bad this year I constantly fear any illness coming into our home and putting Little D in the hospital.  I am so grateful we are almost past that time of year.

I will be back with another Miss K update sometime next week, I'm sure it will be all great news from the EP Cardiologist :o).