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 :).

Migraine Follow Up

I can't believe it has taken so long to get somewhere with Miss K's migraine research!  I've patiently waited for her Pediatrician to get back to me but last week my patience ran out.  Since July's little episode Miss K has experienced at least one day a week complaining of a headache, and at least twice a month of a full day of being so very pale, listless and quick to tears.  Last week she had a headache every day, and one day of pure miserableness :(.  So I called the Pediatrician and told him what was going on, he called all the medical colleges he had been trying to get a hold of and told them he needed their journals right that minute, they all responded amazingly!  And he sent me all that they sent him then he read through them all and explained them to me in lamen's terms.  Apparently this Spontaneous Hypothermia condition has many causes and many outcomes.  So the kiddos with this that had MRI's and EEG's done were found to either be missing a core part of the brain that regulates temperature, having extra or missing electrical pathways in the part of the brain that controls temperature, having seizures that are causing a mix up in the brain, or have nothing wrong with the brain at all and are unexplained.  The ones with the first 3 findings had no symptoms between Hypothermia episodes and were having the episodes quite often, some weekly and some daily.  The ones with nothing wrong were having headaches and other symptoms between the Hypothermia episodes and the episodes were few and far between.  Our Pediatrician feels Miss K falls in the last group since she is having headaches and symptoms since her episode and it's been months since that episode without us catching another one.  This means we likely won't be doing any MRI's or EEG's on Miss K.  But it does mean that we may need to put her on a migraine preventative, preventative that is taken daily because she's too young for us to give her a medication that is only given at the first signs of a migraine.  He said it will be trial and error, we will have to try one medication at a time until one ends up seeming to work on keeping her migraines away.

Over the weekend I had a thought.  When this all began we were told by our Pediatrician that the medication Propranolol that Miss K takes daily for her PJRT is also used as a Migraine suppressant, he was curious as to why Miss K was suddenly having Migraines while taking this medication.  So I wondered if maybe she's in need of a higher dose of Propranolol OR maybe we need to go back to giving the Propranolol strictly every 8 hours rather than just 3 times a day (making sure to keep at least 6 hours between doses), I wonder if the long stretch at night and the short stretches during the day are confusing her brain with the Propranolol and maybe she needs it more consistently.  I called the Pharmacist and ask her about it, she said "It's a bit likely this could be the reason for her migraine breakthroughs, it's definitely worth a try and just might be a part of the problem", I then called our Electrophysiologist and asked his nurse about it and she said "it certainly won't hurt but I can't say it will help at all".  So starting tonight we will be giving Miss K her Propranolol every 8 hours, I'm not looking forward to the middle of the night doses but I'm more than willing to do it if it ends up helping!

This week we see a Pediatric Neurologist to talk about these migraines.  I will be asking her about the Propranolol, hoping that this next few days might be enough for me to see if it makes a difference.

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! 

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.

Another ER Visit :(

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

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

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

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

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

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.

6 Month Check Up

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

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

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

Bradycardic Episodes Update...

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

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

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

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

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

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

7 Months SVT Free with a Twist...

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

On a bad note:

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

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

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

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

I promised an explanation about Baby Brother seeing Urology:

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