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.

Another Hypothermia Episode

Thanksgiving night, of course if Miss K is going to do something sporadic and crazy on the medical side it would be on a holiday.

Sometime around 8:00pm Miss K started acting extra sleepy.  I thought nothing of it since she had not had a nap at all through the day and it was bed time.  We were visiting my grandmother for Thanksgiving pie and Miss K suddenly climbed up on her Grandpa's lap and told him she was tired.  A few minutes later she went pale and limp and started sweating all over, my dad yelled for me to come quick, I entered the room and immediately felt her face, I'd seen her like this back in July, sure enough her face was ice cold, the house was over 80 degrees Fahrenheit.  The rest of her body was ice cold to the touch as well.  I had no real resources for keeping her comfortable and no ride back home because Daddy had just left in our car to meet someone at the house for a minute.   I could only think of one thing to get her to perk up and that was food, my grandmother offered Miss K a banana and she jumped on it, I knew she was hungry as well as tired because it had been a little bit since we'd eaten last, she devoured the banana in minutes.  After that she was awake and had more life in her but still white as snow and cold as ice, her heart was beating quite slowly, though I didn't have a stethoscope to check heart rate so I had to depend on how it felt under my hand.  Finally after a few minutes my parents decided we should head home and gave us a ride.  When we got home I quickly prepared a mini meal/snack for all the kids, Miss K didn't hardly touch it, I talked her into milk and a few bites but that was all.  It took her over an hour to get her heart rate back up and over 2 hours to get her temperature back up, she stayed pale as can be until bedtime.  And as soon as her head hit her pillow she was out cold and snoring.  We kept a close eye on her all night, she just slept like a log and barely stirred but heart rate and temperature stayed normal.

In the last 4 days since then she has had a few "off" moments, a bit pale, red around the eyes, she looks like she feels awful, but she acts completely fine, aside from some crazy mood swings that seem pretty typical for her migraine days.

So apparently Miss K may be one of the "lucky" ones who has the spontaneous hypothermia episodes every 6 months or so, considering it's been roughly 6 months since her last one.

I have not reported it to the neurologist, I'm not sure if she wants me to or not, we didn't discuss that as far as I remember.  I think I'm going to hunt down her business card and possibly shoot her an e-mail.

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.

Miss K is just keeping us on our toes

Today was officially the WORST Monday I have ever had in my life, well except for Miss K's birth day which was on a Monday and pretty bad for me, but today was close!

I had intended to call our new Pediatrician this morning to take baby brother in to check on his eyes, I wasn't overly concerned, it seemed like they were just sunburned but I wanted to make sure it wasn't something worse.  My morning was turned from slow going normal Monday to terrified rush when I got out of bed and went to check on my quiet children in their rooms, I checked Miss K first only to find her laying there awake but quite out of it.  I asked if she was OK and she replied "I'm cold mommy", I felt her forehead expecting a fever but instead found her cold as ice, I felt the rest of her body and limbs to find them ice cold as well, her bedroom was around 80 degrees, she was also sweating profusely, especially her face and nose which, when I wiped them dry, beaded with sweat again immediately.  I ran for the thermometer and stethoscope first checking her temperature, she was at a crazy low of 94 degrees, I checked and double checked only to get the same result.  When I checked her heart rate I immediately heard "lub-dub...pause...lub-dub...pause...dub dub...pause...lub-dub" (normal heart beat is steady "lub-dub, lub-dub, lub-dub"), I got the stop watch out and listened for a minute, her rate was about 55-60 beats per minute, her normal resting rate is around 110 bpm.  Of course I panicked, I wondered if Daddy had overdosed her the night before so I called to double check, he assured me he did it perfectly right.  I called our Cardiologist and left a message asking what I should do, though I know from experience it can sometimes take 24 hours for them to call me back so after a few minutes I decided we couldn't wait that long and called the Pediatrician's office to make an appointment for her and baby brother.  The receptionist didn't want me to wait to bring her in so she had me head over right then.  Picture this:  I hadn't been out of bed more than 15 minutes, I'm in my jammies and my hair and make-up are a complete mess (the one night I choose not to shower or wash my face before bed because I had just done so earlier that afternoon after camping), my kids are in jammies and none of us have eaten breakfast and because it's a Monday my mom was at work and couldn't leave and my little sister was at soccer practice so I had no sitter.  I had less than 10 minutes to somewhat dress all 3 kids, not even time to think about doing hair but I did insist on taking a moment to at least comb the knots from Miss K's hair, I threw whatever clothes I could easily find on and threw a hat on my head, also hastily washed the mascara off my face and re-applied to look a tiny bit presentable.  I scrambled around the house pouring the very last of the yogurt into to go pouches and making big brother a peanut butter sandwich and last minute remembering to grab sippy cups and filling with milk then rushing everyone out the door with whatever shoes we could find by the door.

Our Pediatrician did not like Miss K's symptoms.  He called the closest Pediatric Cardiologist, who happened to be the first one to treat Miss K before we found our EP Cardiologist, and asked for advice.  Together they determined we needed a full blood workup to check for heart failure and infections related to her symptoms, they also determined she needed a chest x-ray to check for heart enlargement and an EKG as well as a 24 hour holter monitor.  Oh and let's add in that baby brother needs to see an Opthalmologist for his eyes because it may not be sunburn but instead an infection of some type.  So our Pediatrician says "go eat lunch then go straight to the hospital to the lab for blood work, then to radiology for chest x-ray, then to cardiology for an EKG and Holter and then you'll be done just in time to go to the Opthalmologist in the next town over."  I have all 3 kids with me, baby brother is being his usual mischief monster self, getting into everything and driving me crazy while Miss K is miserable and crying about wanting to play on my phone and big brother is climbing all over the place vying for someone's attention because he's being ignored...**sigh**  I text my mom and asked if she could meet me when she got off work shortly after we left the Pediatrician's office, of course she said "yes", we left the office with a handful of papers and orders, rushed to McDonald's for lunches to go and rushed over to my grandma's house to meet my mom.  Because we live 15 minutes outside of town and the hospital we had to go to is 20 minutes from "town" and Bug's Opthalmoligist appointment was another 20-30 minutes (traffic depending) from the hospital baby brother had to go with me or we wouldn't get him to his appointment.  I humbly asked my mom to tag along and watch baby brother while we did Miss K's stuff, we left big brother with my little sister at my grandma's house, thankfully my grandma was OK to take the two of them home to our house so they wouldn't have to wait around her house all day for us, I can't wait til my sister has her license!

Up first was blood work at the lab.  Miss K screamed the whole time :(, they drew A LOT of blood for the very long list of tests the Pediatrician had ordered.  And then they sent us off to Radiology next door for her chest x-ray, thankfully Miss K handled it pretty well once I promised her the lady wasn't going to touch her she was just going to "take a picture" of her.  Afterwards we had to find a McDonald's for my mom to eat since she hadn't had time to do so before we had to leave (yeah, my crazy occupied mind didn't think to get my sister and mom lunch while I was getting the rest of us food).  Then it was off to Cardiology for her EKG and holter, we got an adorable kid technician, yes he was a kid, really he was barely 21 and somehow that seems so young to me now lol.  He did a great job convincing Miss K that the EKG stickers were cool and that they would "tickle" her.  She decided he was fun to flirt with while he hooked up her holter monitor and wrapped it all up on her chest.  We left there with barely enough time to get to baby brother's appointment.

While at the Opthalmologist baby brother decided he'd had enough of Dr.'s offices.  After getting the eye dilating drops and being sent out of the exam room to wait he went into one of his inconsolable fits in the waiting room.  I tried everything from getting him interested in the toys to bouncing him around, holding him, putting him down, sitting on the floor with him, giving him my phone to play with, finding an interesting app on my phone for him, digging through my diaper bag for a treat of some sort only to find it devoid of anything edible because today I was far from prepared for a full day trip away from home, I was only supposed to be out for an hour tops, I did not predict being gone all day, we were lucky I had emergency diapers tucked away where they wouldn't get used in any other situation!  Nothing was working, I finally had to put him on the floor and let him get it out of his system...this was interrupted by a very rude Dr. in that office who decided to confront me in a moment of weakness.  Suddenly, amidst the screaming and howling from baby brother, I hear "Can't you console your child?!", I seriously thought the guy was teasing me, I've had that happen many times in the past, so I stood up and asked "I'm sorry, what was that?", I'm sorry I even asked.  The Dr. had the nerve to very rudely tell me I needed to console my child, I told him I was trying and he told me it was obvious to him that I was not trying, I wasn't doing anything for him except neglect him and let him scream.  The desk assistants both spoke up on my behalf and told him we had had a very long day of Dr.'s and that my little guy was in pain having his eyes dilated, the Dr. replied that there was no excuse for being the bad mom that I was and that I should be turned in for the way I was treating my son.  I said I was sorry and that I really was doing all that I could, at this point I picked up my little guy who started to calm a bit which made the Dr. think he was completely correct in his assumption and he said "see, he just wanted your love and affection, all you needed to do was pay attention to him and pick him up", I replied that that was not the case, that I had been holding him and trying to cuddle him up to the moment that he (the Dr.) decided to come see what the commotion was, at which point I had barely set him on the floor as he had flopped down to further throw his tantrum unrestrained, the Dr. had the nerve to continue to tell me that I was a bad mom playing on her phone, ignoring her child in need.  I quit trying to explain myself at that point, I just gave up, because how was I supposed to make this ignorant man believe that I was not playing on my phone but rather trying to figure out why the heck it had no service, and panicking because Dr.'s and hospitals and labs were supposed to be calling me at any moment to give me test results and my phone wasn't going to receive the calls leaving me to panic and wonder.  And during that time of "playing" with my phone I was juggling and trying to console my upset child.  The desk assitants were awesome enough to offer me animal crackers to see if he would calm, I graciously accepted as I looked into the Dr.'s eyes and said "because I don't want to listen to him scream either!!!", the assistants filled a small cup for us and baby brother instantly quit screaming to shove his mouth full of cracker, I very graciously thanked the girls and glared at the Dr. then went back to our waiting.  I wish I had more backbone...in fact if I hadn't of been so stressed, so worried, so very tired, that Dr. would have wished he hadn't of ever met me, but instead my stress, worry and exhaustion softened me and instead I just wanted to melt into a puddle of tears.  I wish I at least knew his name so I could call and file a complaint...I don't know if it would do any good anyway though and I'm beat and fed up with that kind of stuff right now.

We finally left the Opthalmolotist to go fill a prescription for baby brother's eyes, turns out he has an infection in them both, though thankfully it's external and there's nothing wrong internally.  We had to pick up my mom's car from my grandma's house so my mom offered me her keys so I could fill the prescription without kids and she drove my car home so the kids could sleep a bit longer.  Not so great was the fact that my phone battery was on it's last leg for the day and I had no phone charger in my mom's car.  I got to the pharmacy to wait 15 minutes and then be told that the Opthalmoloigist had written the prescription wrong and they had put a call in to him.  Then my phone decided to die and I still hadn't heard from any medical personnel!  Very embarrassed I asked the pharmacy techs if one of them had a charger that would fit my phone and if I could please charge it behind the counter, I am so grateful for their kindness, no questions asked they just plugged it in for me then tried to turn it on, when it wouldn't work we waited a few minutes and tried again, luckily it worked, and my prescription was not ready yet so they suggested I leave my phone plugged in until they were done, less than a minute later my phone was ringing with the Pediatrician calling me, I'm so grateful for the pharmacy technicians help or I would have missed that call!  As soon as I was off the phone with the Dr. the prescription was done and my phone died again.

The verdict is:  We have no idea what is going on with Miss K.  Her symptoms this morning have everyone worried, it's definitely a sign that her heart is/was in distress for some reason.  But her x-ray came back normal, her EKG came back normal for her, all her blood results came back normal.  And now we wait for her holter to finish recording and then see what it shows.

The Pediatrician thinks Miss K had an SVT episode through a lot of, or most of, the night and that I found her shortly after coming out of it, he thinks her symptoms were from her heart being tired after SVT.  I'm praying that's all it is because finding out she has something else wrong with her heart is a nightmare of mine.  I'm also hating hearing it could be that, this means she's having SVT again and we need to adjust medications, a sure sign she's not going to kick her PJRT, even though 4 months ago we were told she wasn't going to outgrow it, being completely SVT free is always a great thing, having ANY SVT is never good.

First thing in the morning I'm calling our EP Cardiologist and telling him about Miss K's symptoms, I'm going to get her in to see him in a week or two instead of the end of August when she's supposed to go in for her 6 month check up.  We've got to figure this out.

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 :).

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.

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).

Interesting...

I recently got a bit curious about a certain possible side effect of either Propanolol or Digoxin in children.  Miss K is such a very tiny little girl, she has only gained 2 pounds in 10 months and is a bit on the short side.  I haven't been too bothered by this until recently since she was 15 months and weighed roughly 18 pounds and now, 3 months later, she is still sitting around 18 pounds I realized she was around that same weight at 12 months as well.  Seems a bit off to me.  Neither of her doctors have mentioned any concern about weight though.  So I tried looking up any possibilities of stunted growth while on either or both Propanolol and Digoxin.  I came up with nothing so far.  But I have asked other SVT momma's if they've noticed lack of growth in their children who are on these same medications, I'm waiting on answers and it may take a while.  But while researching tonight I came across something interesting that I have not found before.  I was on www.kidshealth.org reading about Propanolol when I came across this note:

Limit your child's use of caffeine and chocolate. Use with this drug (Propanolol) may cause nervousness, shakiness, and a fast heartbeat. **click here**


Well!  No wonder Miss K has episodes of SVT when she eats chocolate!  We have always just attributed it to the PJRT itself but never thought about it being because of one of her medications!  So mixing chocolate (or caffeine) with Propanolol can cause a fast heart rate.  That's just great, as if chocolate and caffeine naturally causing fast heart rate on it's own isn't enough we now have to worry about the medication aiding in this fast heart rate from chocolate lol.

So for those of you who read this and have a child using Propanolol be aware!  And for those of you who read this who are family or friends of ours please remember this and don't give Miss K chocolate or caffeine without asking us first!

SVT

What a bad week we have been having :o(, I hope it gets better after this "hump day" rather than staying the same or, I pray not, worse!

Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard.  He failed to check and make sure it wasn't plugged though.  Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out.  The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice.  So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water.  That's 1 skipped dose.  Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it.  That's 2 skipped doses in one 24 hour period, back to back.  Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened.  I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.

Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician.  She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat.  Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health.  He even said her heart sounded perfect.

Monday night Miss K spent the night playing in her crib, literally all night.  No crying just sweet talking and playing.

Tuesday morning Miss K woke up with a fever, the first fever she has ever had.  It was at 101 F.  I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying.  She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do.  She took an hour nap but woke up with the fever all over again.  Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's.  Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90.  I gave her Tylenol to help with the returned fever and called PCMC.  At this point it was after hours so I had to have the on call Pediatric Cardiologist paged.  I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration.  It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.

Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.

This morning she woke up with a lower fever of about 99 F.  I held off giving her anything for it so that it could burn off whatever illness she may be fighting.  But around 11:00am she started to get fussy again and just wanted to be held.  I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest.  I check her to find that she was in SVT :o(.  It took me almost 5 minutes to get her out of it.  Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in.  An hour later, after constant tears and miserable crying, I found that she was in SVT yet again.  This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT.  I tried our usual Physical Maneuvers with no success.  After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment.  I hate this one.  But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K.  Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version.  We got lucky and it did work, on the first try.  It really upset her though and had her crying so hard she had the hiccups :o(.

After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now.  I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.

The 2 missed doses were very bad timing.  Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes.  We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal.  Poor baby :o(.

**Added Note:

Miss K had 1 more SVT episode before the end of the day.  3 in one day...Wow.  This last episode required the ice treatment again.  It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(.  But it did work.  Miss K ended the day with a much better active heart rate of about 120.

It Seems I Spoke too Soon :o(.

Miss K had a breakthrough SVT episode this morning :o(.  Her first one in 3 months :o(.  Since January she's been quite good at having an episode once every 3 months, I should have been prepared for it instead of surprised this time.

Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(.  She was VERY congested last year starting a few days after coming home from PCMC, around this same time.  We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment.  No such luck.  Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.

So today the SVT could have been caused by any number of things.  I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason.  I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist.  When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.

I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast.  So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM.  I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate.  It took a mere 5 seconds from finding her in SVT to getting her out of it.  I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not.  I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.

I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up.  I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(.  Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death.  I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage.  It terrifies me.

1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o).  Here's to hoping!

1 Month...

...since Miss K was taken off of the Amiodarone and...

She has done unbelievably awesome!

Just a few short weeks after taking her off the medication we noticed some things different in her behavior and health, good things :o):

She is WAY less constipated (see Side Effects).  The poor thing has been so constipated since getting the Amiodarone and Propanolol into her system.  We finally had to resort to giving her Miralax for relief when the Prunes and Applesauce quit working :o(.  But within a few weeks of being off the Amiodarone she started having more regular bowl movements.  They are still not as soft as they should be for her age but they are not as hard and definitely not as painful as they used to be.  We have been able to cut the Miralax down to as needed instead of daily :o).

She is less sleepy!  It was so hard for her to transition from 2 naps a day to just 1 but we had to do it because she just wasn't going to bed at a decent hour at night while taking 2 naps.  While on the Amiodarone she just wanted to sleep, a lot.  Since taking her off of it she has been just fine with taking only 1 nap daily and going to sleep at a great hour for bed time :o).

She has been so much happier through the day, very hard to believe for this baby since she has ALWAYS been the happiest baby around but she has gotten HAPPIER.  We've had less crying and tantrums than before, and I completely attribute this to no longer being as tired as she used to be.

Within a week of being off the Amiodarone I did notice her heart rate went up.  She used to be in the steady 90's when resting/sleeping and around 105 BPM when active but after taking her off the Amiodarone her heart rate went to around 107 BPM resting/sleeping and around 110-115 when active.  And when she'd get upset/worked up while on the Amiodarone her heart rate always stayed around 105 BPM, now when she gets upset/worked up her heart beats quite a bit faster at around 125 BPM but this is FAR from being SVT in any way so I have not worried, it's actually more normal for a baby/child to have a higher heart rate while upset.  At first I worried but then I remembered something important from the beginning of our journey with Miss K...her EP Cardiologist was never truly satisfied with Miss K's heart rate before, he was a bit concerned about how slow it was and confided in us that it was either the Amiodarone or a combination of both medications that was making her heart rate so low.  Her QT Intervals were a bit long as well.  Since we haven't had an EKG since taking her off of the Amiodarone we don't know how her QT Intervals are now but it actually seems reassuring that her heart rate is faster now.  I feel her EP Cardiologist is going to be happy with how her heart is doing without the Amiodarone.

And of course having one less medication to give in the day is so much easier on all of us!  The fact that it is the most dangerous medication that she is no longer taking makes us even more happy about all of this :o).

We have an appointment to see her EP Cardiologist near the end of October.  It was supposed to be scheduled 1 month after her last one in August but they only had 2 appointment availabilities when I called, one in September and one in October, the October one just seemed more appropriate.  I wanted her to be off the Amiodarone long enough to show real results when we went back in and this will be the case going in 2 1/2 months after stopping it.  We are excited to see what the EP Cardiologist has to say.

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

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

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

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

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