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 ;) ;).


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


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 :).