Cardiac (Catheter) Ablation

Well, we took the plunge and scheduled the ablation for the end of this year.

Shortly after the last update we started seeing high heart rates on Kimber's FitBit.  And then 3 times she told me "Feel my heart, it's bumping", all 3 times she was in SVT.  I'm not sure if she has been having episodes all along without us knowing or if this was a new thing, in the past many, many times Kimber came to me and asked me to feel her heart because it was "Bumping" but when I'd listen it was in normal rhythm so I thought she was just becoming aware of her heart beat, I mean surely she couldn't be having SVT because this kid had never, ever converted out of an episode on her own before so why would she now?  I'm second guessing that thinking now, I'm pretty sure she's been having episodes for at least the last 2 years but was converting pretty quickly, obviously before I listened to her heart.  The last 3 episodes that we, and the FitBit caught, were short, 5-15 minutes long, and she self converted without any vagal maneuvers, twice we were listening to her heart and heard it convert on its own.  The self conversion is amazing news!  But knowing this now brings new light to Kimber's claims that her heart was beating too fast in the past, all this time we've thought she was SVT free when she really wasn't.  Having so many episodes suddenly happening so frequently we called the EP who upped her medication doses for the first time in 4 years and pleaded with us to reconsider ablation sooner rather than later.  After much thought and prayer we decided now is the time so I called and got her scheduled for December 7, 2016.

Here is a screen shot of the FitBit app showing one of Kimber's spikes to SVT:

And since then we've been waiting.  Last night was the very last dose of heart medications for Kimber, after 5.5 years of heart medications Kimber is hopefully done forever.  Now, I say "hopefully" because:
a) the ablation could be unsuccessful and she could end up right back on the medications soon after.
b) even if the ablation is successful the SVT could come back later in life, most likely around puberty when hormones and the body starts to change.

We opted to slowly wean Kimber off the medications rather than suddenly stopping them, the EP didn't say which to do and the Pharmacist said it was up to us so we decided the slow wean was probably best since we'd heart stories of terrible withdraw issues in other kids who stopped suddenly.  I tell you what, the last week has been so, so hard on all of us!  Remember Kimber has been on these medications for years, since just a week old, it's all her body knows, so when we started lowering the doses her hormones and her body started to resist, it wasn't happy about it, and essentially didn't know what to do without the medications.  Kimber has had terrible mood swings, yes she's a 5 year old girl and they're pretty moody by nature, but this was worse and came on quite suddenly.  She has been terribly emotional, clingy, and had a hard time being separated from us.  One day I had to carry her kicking and screaming onto the bus and had to pry a monkey grip of a Kimber off of me forcefully, plop her down in a bus seat, and the driver and I had to have an older girl sit next to her and block her in so she wouldn't leave the seat and come after me, the bus left with a screaming little girl and left me crying on the side of the road.  Luckily the driver reported later that afternoon that Kimber stopped crying very soon after leaving the bus stop and giggled and had fun most of the ride to school.  This week as I walked Kimber to dance class she suddenly wrapped herself around my legs and begged me to carry her, I obliged only to have her monkey grip me again and refuse to leave my arms once in the dance room, a lot of coaxing, pulling and prying, and I was again leaving a screaming Kimber in someone else's care.  I won't mention the long days at home, let's just say it has been rough.  None of this is typical Kimber behavior and all suddenly started just a few days after we started weaning her off medications.  Hopefully it is short lived and we have our happy girl back soon!

It was bittersweet giving that last dose!  And funny enough this morning as Kimber left her bedroom I called her back, presumably to give her medications, I stopped for a beat as she walked into her room and asked "what mom?" and I smiled and said "nothing baby girl, just go get dressed".  It's so routine that I know it's going to take months, or more, to remember we don't do it anymore.

Here is a picture collage commemorating the last dose, I couldn't help it, we needed to document it as it's such an epic milestone.

I will keep this blog updated, this will be my communication to keep everyone in the loop on surgery day so check back here often on December 7-8th to keep yourself updated on Kimber's progress.

Prayers that they can successfully get Kimber to go into SVT in order to accomplish the surgery, that they will be able to ablate it all successfully, that Kimber will handle the surgery well and come out OK, that we can avoid any and all complications, and that recovery will go smoothly and quickly for her, would be greatly appreciated.  Oh, and maybe a little prayer for Mommy and Daddy as well ;).

Past Due Update

I cannot believe it has been 18 months since my last update.  I am so sorry we have not been active here!  Life has just been so, so busy.  In May 2015 we added baby #4 and it really threw me off, I have not been able to do much other than care for my kids and work my jobs.

In May 2015, soon after bringing new Baby Brother home, my mom found a lump in Kimber's neck that concerned her, I kept an eye on it for a few days and realized it was growing, and quite fast.  I took her to the Dr., who happened to be the on call Dr. rather than her regular pediatrician, he told us there was nothing he could do for 2 weeks!  I did not feel comfortable with this so a few days later I called her regular pediatrician for a visit, he wasn't overly concerned either but he sent us in for an ultrasound on it, she was diagnosed as having a Thyroglossal duct cyst.  This is not dangerous and is seen in a large percentage of children.  These cysts can be left and watched for a long while until painful or very large, and it can take a long while to hit this point.  We opted to have Kimber's removed as soon as we could because she was claiming to be in pain from it and was not eating well.

In July 2015 Kimber went in for her Thyroglossal Duct Cyst surgery.  Everything went well.  It was discovered to be a rather large cyst that went further back than the ultrasound showed and proved to be a very good thing we had it removed when we did.  Kimber's heart handled the surgery very well!  We happened to get a very knowledgeable Anesthesiologist who had dealt with SVT patients in surgery before, as well as had patients go into SVT under her watch so she knew what to watch for and knew how to handle the situation, but like I said, Kimber did great.  It was a quick recovery.

Kimber's Spontaneous Hypothermia Migraines have continued to plague her.  She has had another 2 episodes since the last one noted on this blog.  She complains her head hurts a few days of the week and is still taking the migraine suppressant.  There is still nothing more we can do except hope she outgrows it soon.

This is an example of Kimber's temperature reading while in Spontaneous Hypothermia, this is one of her higher readings.

In the Fall of 2015 Kimber gave us a bit of an SVT scare.  She woke in the night with a very, very high fever and her heart rate was in the 170's, but it was not in her PJRT rhythm so we just watched and waited for the Motrin to kick in and bring the fever down.  Once her fever was under control her heart rate slowed to the 150's for the rest of the night and early morning when her fever broke her heart rate dropped back to normal range.  She spent the day quite under the weather but no SVT.  We took her to visit the Dr. when other symptoms became apparent, she was a new to us Dr. and she panicked and gave us a good lecture for not taking Kimber to the ER the night before with that heart rate but we assured her we felt she was fine, she still insisted we were in the wrong and actually made me feel like maybe we'd done something wrong so I called our EP who laughed and reassured us that our judgement was trustworthy and he felt as long as the heart rate came down with the fever reducers then she was fine and a visit to the ER was unnecessary.  He still didn't wish to see her until March, YAY!

We made it an entire year between the last updated Cardiology visit and the next one!  We saw the EP for a yearly, yes that's right YEARLY!, visit in March 2016.

At Kimber's March visit with the EP he explained that he didn't want to wean off of medications, he still could see the PJRT on her EKG, I tried to talk him into it but he wouldn't go for it at all.  Instead he said Kimber is ready for a catheter ablation, she finally hit the weight requirements and we are cleared to schedule it whenever we feel we can.  Talk about terrifying!  I've prayed for this day to come but I never thought it'd actually be here and now I'm scared to do it!  We want Kimber off the medications, so, so badly, especially since we are more likely lately to miss her afternoon dose than we ever have been, she misses the afternoon dose of Propranolol about 3-4 times a week because we're busy, we forgot to bring it with us, my alarm didn't go off or I didn't hear it, or my alarm did go off but I wasn't in a position to run and grab her and the Propranolol and I completely forget afterwards.  Her EP said it's not a very good thing that we miss doses but he said it is a sure sign it's time for an ablation, and he really laughed it off and said "let's get it scheduled so you don't need to worry about it anymore".
But here it is nearly September and I have not yet scheduled the surgery...
1.  Because I'm scared.  Yes that's the #1 reason and I know, it's ridiculous.  I just keep putting it off though.
2.  Because of the baby.  Some, maybe most, won't understand this.  Baby brother is 15 months old now, but he's still breastfeeding 5-6 times a day, I can't in good conscience leave him for an entire day without me, he's still not eating enough food or drinking enough from a cup to satisfy.  But I can't take him with me, a toddler in the OR waiting room, and then in recovery, would be disaster.
3.  Finances.  Enough said.

Kimber starts Kindergarten tomorrow!  *Sniff* I'm having a hard time with this.  We got a 504 plan for her (helps give exceptions for school, makes the teachers and staff aware that she has a health issue, etc.).  I have a detailed, written medical plan of action for the school nurse, front office/principal, teacher, district, and bus drivers, things like symptoms to watch for, how to care for her if she has an SVT or hypothermia episode, the fact that she cannot go long without food or drink because of her Propranolol, special instruction to try getting her into the lunchroom first thing for breakfast to stock up on some calories, allowing a snack and water bottle on the bus in the afternoon to get her home so she doesn't pass out from low blood sugar (breakfast at home will be at 7:00am, she won't get home for lunch until 12:00 or 12:30, that's 5+ hours between meals without these special allowances).  We saved up and bought a FitBit Charge HR for her after extensive research and finding an unbeatable deal on one, this will give me peace of mind knowing I can check her daily heart rate when she gets home and her teacher and aides can see her heart rate right there on her wrist all day, I'm working on getting it insured if possible in case it's lost or stolen.  Despite our constant worry about SVT my main concern is Kimber having a Hypothermia episode while at school.  It seems that is more likely than an SVT episode.  I keep having to tell myself I need to breath, everything's going to be OK.  I'm so happy she gets to go to school like she wants to but I'm really struggling with the thought of keeping her home with me.

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 :).

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 Spontaneous Hypothermia Condition...

Episodic spontaneous hypothermia: a periodic childhood syndrome OR Spontaneous Periodic Hypothermia and Hyperhidrosis:  a Possibly novel cerebral neurotransmitter disorder.

As if Miss K really needs something else going on with her.  Seriously, why my little girl?!  It's not fair.  A few weeks back I posted about a crazy little episode (Find it Here) Miss K had, when she woke up cold as ice, body temperature of 94 degrees Fahrenheit, sweating profusely, heart rate in the low 50 BPM's, listless and pale, in a room that was at least 80 degrees Fahrenheit.  Since then we've been to her EP Cardiologist who did not agree that her symptoms could be heart related in any way (Read Here), I was concerned and put on my Mommy Advocate, Research Guru Pants and started combing the internet.  It took a few tries to find anything worth looking through, my first search of just symptoms brought up a whole list of websites to comb through, none of them making much sense to me, I changed the search to include her age and gender as well as all symptoms and just 3, that's right just THREE, websites came up, all 3 made more sense than I wanted them to.  I found a diagnosis.  But my diagnosis was, obviously, self diagnosed, as well as found on "Dr. Google", I'm not a fan of self diagnosing especially through Google searches so I printed everything I found  to take to our Pediatrician a few days later when we went in for Miss K's 3 year Well Child Exam.  I'm beginning to really like our new Pediatrician.  He compliments me constantly on what a great advocate I am for my daughter, and he is always thanking me for being so informative, knowing so much about my daughter's condition, and for giving him new stuff to research (not that our old Pediatrician wasn't the same, he really was great about that stuff, I'm just happy to have found another one who is of the same mind).  So when I brought the information about Spontaneous Hypothermia he did not reprimand or belittle me at all, he thanked me, he read what I gave him right then, and he decided we needed to research it further from a medical standpoint because it all made sense to him, he felt there was a strong likelihood that this was what Miss K had experienced.

Since that visit with our Pediatrician Miss K has complained of her head hurting a handful of times, and on those days she wakes up seemingly fine and full of energy but within an hour or so she goes downhill pretty quickly, telling me her head hurts and laying around on the couch all day, her naps on these days vary between unusually long and unusually short and miserable.  We've had these types of days many, many times in the past 2 years but until recently she's never complained of anything hurting her, I assume this is only because she couldn't tell me what was hurting because she was too young to understand.

Yesterday I had to take Miss K in to the Pediatrician yet again, this time for what I suspected to be a Urinary Tract Infection or something along those lines.  This is her second possible UTI :(.  I was pleasantly surprised when the Doctor came in and immediately wished to talk to me about my findings about Spontaneous Hypothermia.  He explained that this condition is Migraine related, it's a type of Migraine that typically affects children but can sometimes affect adults too.  He explained that he's almost positive Miss K has a rare Migraine condition that we've never caught symptoms of before because she's taking Propranolol, which is not only a heart Arrhythmia and Blood Pressure medication but also a Migraine suppressant, he feels the Propranolol has been suppressing any and most signs of Migraine.  When I told him about her past off days and her added complaint of her head hurting it only confirmed his suspicions.  He has requested some medical journals not available to the public and is going to research them when they arrive, he also has a friend who is a Pediatric Neurologist, supposedly one of the top PN's in Utah, he highly recommends her, once he has researched the journals he plans to contact this PN and ask her opinion, he says he's more than sure she will wish to consult with me and Kimber as soon as possible and he suggests we do so.  He talked about starting her on a Migraine medication immediately but I told him I'd rather not just yet, I want to be sure we're treating what we think we're treating before pushing yet another medication into her tiny little body.  Though his main concern is the future, when we do finally get to take Miss K off of all her heart medications and have a, hopefully, successful catheter ablation done, we will be taking her off of the Propranolol, which is likely suppressing any Migraines she may be experiencing, this could mean trouble for our little girl, she could end up slammed with major, unbearable, Migraines due to being without the Propranolol.  We all know this is not happening for at least 2 years but it will happen and we do not wish to put our daughter through such pain and discomfort :(.

To say I'm scared would be an understatement.  This isn't right.  It isn't fair.  We'll keep updating as we know more.

As far as the main reason for our visit yesterday goes...that's another thing of bad news :(.  Miss K had blood in her urine but all other in office tests came back negative so he's sending it in for a culture to see what is going on.  She's obviously struggling, she's using the bathroom at least 15 times in a 30 minute period and started complaining her back hurt the day before, she cringes when she tries to potty and she barely dribbles each time :(.  If the culture comes back with bacteria growth then we'll know we're treating a UTI or other infection, she is currently on an antibiotic to clear up whatever is bothering her.  But if the culture grows nothing we will have to go back in and do another urine test, if there's still blood then there's something else going on that we'll need to investigate.  And on top of all this she's constipated, which, if she does have a UTI, may be the cause of it, so she's been put back on a daily dose of Miralax, something we haven't had to do since she was just over a year old.

 We can use all the prayers we can get right now.  Our little girl is dealing with some tough issues :(.

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! 

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 ;) ;).

A Cardiolgy Visit

Miss K got to visit her EP Cardiologist, Dr. P, for her 6 month follow up :).

The appointment went as I expected it to go.  Everyone hopes I'll be updating with great news that Miss K's PJRT has magically disappeared and she is "over it", everyone hopes I'll be reporting that we've taken a huge step and decided to lower her medication doses or that we have talked about lowering doses or taking her off of the medications in the near future.  I have to admit I really, really wish I could be telling you these wonderful things in my update.

The truth is, Miss K has not outgrown her PJRT and is not going to do so, at all, ever.  Dr. P has been very optimistic in the past, he has given us hope that we could at least "talk" about changing her medications to lower or fewer doses in upcoming appointments but today he did not give us this hopeful news.  Dr. P was very down to earth and honest today.  He is still seeing Miss K's PJRT on her EKG's, this does not mean she is having SVT episodes, the existence of PJRT is not solely based on having episodes, it is also based on the P-waves on the EKG, and Miss K's P-waves show that she does indeed still have PJRT, that without her medications she would be having persistent SVT episodes without a doubt.

Since I made the hour and a half drive to her appointment in a horrible rain storm through a dangerous canyon with all 3 kids in tow today I decided not to let the appointment end after a short 10-15 minutes.  I took the time, knowing we were his last appointment for the day, and asked him questions that have come up over the past year, I got to ask him a few questions I never thought to ask before having it brought up on our PJRT facebook page or other SVT sites I am a part of.  I learned a lot today!

If you go to THIS web page it explains SVT very well in great terms that anyone can understand, it also shows a diagram of a normal heart and where the "electrical" impulses come from and are supposed to go through (diagram is below), a friend found this site a few weeks ago and shared, I'm so grateful for my SVT friends!  This web page got me wondering why I didn't know exactly what PJRT was in the heart so I asked Dr. P about it today :).

Dr. P says PJRT is Re-entry SVT, Accessory Pathway (explained on the site referred to above).  When a person has PJRT it means the electrical impulse from the Sino-atrial node will follow a path down and around the Right Atrium, under the Right Ventrical and up to the Atrio-Ventricular node and into the Right Atrium, following the path on the diagram above, a normal heart's pathway will bring the signal quickly into the Atrium just as the Atrium contracts with the heart beat, a PJRT pathway will bring the signal very slowly into the Atrium missing the Atrium's contraction, or delaying the contraction, causing the heart to overreact, or panic, and thus setting off the SVT episode.  The Propranolol and Digoxin do not change this pathway or the electrical impulses speed, the pathway and impulse will continue in the same slow manner until an ablation is done to correct it.  Instead, the Propranolol and Digoxin only keep the heart from overreacting, they keep the heart rate at a steady, slower pace most of the time even though the impulse is slow to enter the atrium.  This slow impulse is what is seen on an EKG, the time interval between the R wave and the following p wave is longer than the interval between the p wave and the R wave that follows it.  Dr. P mentioned that a lot of the time children are only tentatively diagnosed with PJRT because they can't determine exactly what type of SVT they are seeing without an Intracardiac Electrophysiology Study done (EP Study), where they send a catheter into the heart to see how the electrical system is working and find out what/where the Accessory pathway is, but sometimes, in rare cases, they can see, without a doubt, that the child has PJRT because of the P wave on the EKG.  Dr. P has always said he knew without a doubt Miss K has PJRT but I never asked how before now, today he confirmed that Miss K was a "for sure, no doubt" PJRT case based off what he saw on her first EKG because her P waves were VERY wide, among a few other factors that made it a definite case of PJRT.

Today the hammer dropped.  Any of my hopes were dashed completely.  Miss K will be kept on her medications until a Catheter Ablation is done.  Every time she gains a kilogram in weight (2-3 pounds) we will, without a doubt, be upping her medication doses whether she is having breakthrough SVT or not, Dr. P does not want her having episodes at all, and he assured me that if we are slack with dose adjustments she WILL have breakthroughs.  When she is 5 years old we will talk about ablation options.  He said it will be up to us as to whether she has the ablation at age 5 or if we keep her on medications longer and wait a few more years, either way she WILL be having an ablation done.  He is confident that, even if we can successfully pull all medications and see no breakthroughs, she will end up in the ER with a severe episode and be put back on medications or forced to do an ablation so his advice is to have the ablation done as early as possible so we can rest easy as she grows and not worry about a sudden breakthrough.  I personally don't want to get a phone call from my teenage daughter, or her coach/teacher, during a sport she is involved in telling me she is on her way to the ER.  I want her to be able to participate in sports without stressing about a possible SVT attack.

So there you have it.  Miss K is ALWAYS going to be on medications for her PJRT, until a successful ablation is done.

The best part of this appointment is that Miss K was a champ the whole time :), not one tear, no crying, no screaming.  She let the nurse put the EKG stickers on her and the wires without a peep, she did poke her lip out and I saw a slight quiver but no crying actually happened :).  She played and interacted with Dr. P, who couldn't believe how much she has grown since last seeing him.  She was also weighed today, I am so proud to say that Miss K is now 22 pounds!  She has gained 2 pounds in 3 months, this is a huge deal with this tiny girl :).

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.