7.14.2014

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.

6.17.2014

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.

4.28.2014

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.

3.17.2014

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 ;) ;).

3.12.2014

Having Something in Common with a Celebrity

If it's true I really hate that she's absolutely not a person that I could ever approve of my daughter admiring, but it would be so great if Miss K could say "I have a heart condition in common with Miley Cyrus!" and be proud of it...http://www.nowmagazine.co.uk/celebrity-news/549387/miley-cyrus-s-heart-condition-means-her-next-party-could-be-her-last


3.04.2014

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 :).

2.14.2014

2.08.2014

CHD Awareness Week

Please visit our page "My PJRT Sisters and Brothers" above, for the next 7 days I will be sharing a spotlight on a PJRT child we have met in the past year :).

http://thestoryofababywithsvt.blogspot.com/p/my-pjrt-sisters-and-brothers.html

2.07.2014

2.06.2014

A Small Favor

Hello family and friends :)

Did you know tomorrow, Friday February 7, 2014 is the first day of Congenital Heart Defects Awareness week?!?  It came up fast, I almost forgot to remind everyone!

I have a favor to ask of all of you.

Could I PLEASE, PLEASE, PLEASE get each and every one of you, including your children, to wear RED tomorrow all day?  I would really, really appreciate it!  When asked why you're wearing red (teach your kiddos to tell their teachers and friends), tell them you are wearing it for a family member/friend who has a Heart Defect and you are honoring her and helping her spread awareness about Congenital Heart Defects.  Let's spread the word for more research!

This is REALLY important to me, I would LOVE to see a picture of your families wearing red tomorrow, if you get a moment would you snap a picture and send it to me?  Or tag me on Facebook if you can :).  PLEASE PLEASE PLEASE PLEASE help us out and wear RED tomorrow?

Thank you from the bottom of my heart :).