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.

Neurology Report and Speech Therapy

We saw the Neurologist today.  I didn't recognize the name, and at first didn't know her face but then she said "Hi!  It's nice to see you guys again!", uuuummmmm, "again?" I said, I was so confused!  Apparently this Neurologist is the one who was on Miss K's case in Primary Children's during her long stay as an infant.  After talking for a while I started to recognize her face and remembered her just a tiny bit.

So, the news hasn't changed much.  Yes Miss K is likely having migraines.  At first it was a "no" we don't need to do any testing unless Mom wants it, and my answer was "no".  She was just as baffled about the episode in July as the rest of us are but had done her research in the last week knowing Miss K was coming in.

We got to talking and she asked more and more in depth questions about Miss K and her overall personality.

I talked about her eating issues...Miss K doesn't eat.  At meal times she constantly moves around until we give up and buckle her into her booster seat, she doesn't put any food into her mouth, we have to instruct her through the whole eating process and it takes an hour minimum to get a somewhat OK amount of food into her, what do I mean "instruct?", exactly that, every step:  "(Miss K) pick up some food, now put it in your mouth NOW", all said VERY slowly, VERY pronounced, each word said very clearly and separately.  If we don't instruct her she will sit there and never touch her food, no matter how hungry she is.  It's clearly not for attention as we've tried not doing it and she'll go days without more than a bite to eat each day, we've tried giving all 3 kids the same amount of positive attention at the table, keeping the negative out of the picture, so that she doesn't feel we're not paying attention to her enough, we've tried excusing everyone from the table and leaving her there longer without anyone to distract and she touches nothing on her plate for up to 30 minutes before we give up on her and let her get down as well.  She's not a snacker, she never has been, no matter how hungry she is she doesn't snack.

I talked about her slow thought process...Miss K doesn't understand most directions and the words "no" and "stop" when she's in trouble do absolutely nothing, no amount of loving guidance gets us anywhere with her, every love and logic thing we've tried has gone past her without even pausing, when we need to get the point across it takes 4-5 times of telling her "no" or "stop" until we get into her face and make her look us in the eye and VERY firmly, showing how upset we are with facial expression, telling her "NO!" or "STOP!" before we suddenly see a light bulb turn on in her eyes like "Ooooohhhh!  Mommy said no!" and then she quits.  Every instruction she is given has to be done very slowly with her looking us directly in the eye and even then she doesn't get half of it.  She's very slow to process things she's told.

I talked about her speech...Miss K is very hard to understand.  We understand her 21 month old brother clear as a bell but not Miss K at all.  Her Pediatrician said if 3/4 strangers can't understand her then she likely needs speech therapy.  Well, more than 3/4 FAMILY can't understand her let alone strangers.  Simple requests from her for some things are understandable to Mommy and Daddy but not clear at all.  When she tries to tell us a story, like what she did at Preschool, it's a jabbering mess that she repeats over and over like a broken record until she thinks she's told a great story, not one word understood by the listener, even if it's Mommy or Daddy.

The Neurologist changed her mind about the testing after this conversation.  She thinks we should do an MRI, she thinks it will help to know how Miss K's brain works.  She said after the MRI we might do some cognitive testing as well.

The plan of action after today is for the Neurologist to contact our EP Cardiologist and get his permission to do an MRI, because it must be sedated and that can be dangerous for Miss K's heart rate so we have to make sure her EP Cardiologist feels comfortable with us having it done, if he does not clear it then we will just skip it, it won't hurt anything it will only help to have an MRI.  Secondly we are putting Miss K on a daily anti migraine medication, it hasn't been prescribed yet only because, again, we have to clear it with her EP Cardiologist and the Pharmacist, make sure it will be OK to give with the Propranolol and Digoxin as well as be OK for her heart rate.

Also, while I'm updating, we have started the process for speech therapy.  Some think age 3 is way too young to even worry about it.  It's not too young, it's not too early, it's not pushing Miss K to learn faster than she needs to, blah, blah, blah, blah.  The Dr.'s say she's OK if she doesn't qualify for it, or if I prefer she not take it, it's not important so, no, it's not the Dr.'s or any teacher trying to push it on me because kids are being pushed too hard too soon.  I made the choice to see if she even qualifies for a number of reasons.

Number 1: I cannot understand her, half the time I cannot even guess what she's trying to say and it's frustrating for me to not be able to help her, it's frustrating for her to have nobody understand her.  When she asks me for something..."Mommy, I want a shiosay"...I ask her to repeat it, and apologize for not understanding her, about 5 minutes later she's repeated it over and over again and can't say it any other way and I absolutely cannot figure out what she's asking for so I end up saying "I'm so sorry baby, I can't understand what you're asking for, I'm going to have to say 'no'", I want to cry, she wants to cry, and we end in a heap of hugs :(, this is a daily occurrence. 

Number 2 I would rather her start speech therapy now while she's young and still learning, her way of speech is not ingrained in her brain, she's not quite used to it yet so it's not as hard to change it, and I'd much rather have her either done with speech therapy or already in it and getting help when she starts Kindergarten, I really don't want her to start Kindergarten having been only helped at home and be told that she needs speech therapy, which may or may not happen but I'd much rather avoid it however possible. 

Number 3 speech therapy through the school is free, so why not do it if she qualifies?  I won't pay for a private therapist, if she doesn't qualify we'll just keep working on it at home and try again next year if I feel she still needs it. 

As of right now we've started the process with the hearing and vision specialist, she passed the hearing and vision part with flying colors, even impressed the specialist.  The speech part she was right on the border, a score of 18 is allowable at age 3 and she got exactly 18, which doesn't always happen, as far as her understanding speech when being spoken to and following directions goes the specialist said she is behind developmentally and he said even though she scored an 18 she is really behind in her speech.  From that round of testing the verdict was it can go either way, she has two more people to see and test with and those tests can easily tip the scale either direction.  We see the next specialist for testing next week.

We have a lot going on.  As soon as Miss K's EP Cardiologist is contacted we will know what to do and when.  I'll keep updated as I can.

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 Spontaneous Hypothermia Condition...

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

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

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

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

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

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

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

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.

Hair Loss

About 7 or 8 months ago I remember reading a post by a SVT mom talking about hair loss being linked with the use of Propranolol.  I never thought much of it since Miss K wasn't having hair loss issues, I felt bad for her but didn't think to remember that post.

Fast forward about 4 months and you find me crying over a clump of Miss K's hair.  I was taking a hair band out of her hair, I'm always gentle about this and the hair band was a soft no-pull one, but on this night a chunk of Miss K's hair came out with it.  It was perfect, it looked as though I had taken a pair of scissors and cut the hair in a perfect square.  There I was holding a lock of precious, sweet hair.

Fast forward another 2 or 3 months and you find me constantly dealing with hand fulls of hair each time I comb Miss K's hair, no matter if it is soft and tangle free or completely riddled with tangles and knots, no matter if it is wet or dry, Miss K's hair is coming out in clumps.  She has a bald spot in the front that I thought was just genetics, except that there was hair there one day and then the next there wasn't, but I didn't really notice how fast it had gone nor did I really remember there being hair there at all, now looking back at pictures I see that there was hair there at one time and there's really no reason for her not to have hair there now.

I finally realized something was up.  I got on all the facebook support pages I follow and asked around about hair loss being connected with either Propranolol or Digoxin, or maybe even a delayed side effect from Amiodarone, a long shot I know but I have been desperate to find a reason for her hair loss.  Most of the mom's that answered had never heard of hair loss being connected to any of the three medications.  But a choice few had heard of a link and were willing to share.  Turns out I found the mom who mentioned hair loss and Propranolol months ago, she verified that her daughter had a hair loss problem off and on while taking the Propranolol, she couldn't tell why some months were better than others but she could confirm that her daughter's Cardiologist admitted that hair loss is a side effect of Propranolol, uncommon and not well known but still a side effect.  Another mom commented that her daughter's Cardiologist also mentioned hair loss as a side effect of Prorpanolol.  After reading these comments I dug through some more websites looking for this side effect to be noted somewhere and, amazingly, I finally found it, a site that has hair loss listed as uncommon and not well known but it is a side effect of Propranolol.

I will, of course, be asking our own EP Cardiologist and our Pediatrician, and maybe even our Pharmacist, just to make sure this is really what's going on with Miss K.  I will update when I can.  I am almost sure the Propranolol is the cause but I also know that low Iron and a lack of certain vitamins and minerals can cause hair loss as well and seeing that Miss K is not the greatest little eater these could certainly be part of the cause.

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.

Heart Murmurs

Little D had his 2 month well child exam this week, he's doing great :o).  And I absolutely love our Pediatrician, he is so on track and knows everything that's going on with his patients.  The minute he walked into the exam room he said "so a healthy, clean heart report from the Cardiologist huh?", he had received and reviewed the notes from Miss K's EP Cardiologist about Little D.  Strange he did not mentioned the murmur he had heard.  When I told the Pediatrician that the EP Cardiologist had heard a murmur he was quick to listen for himself.  He said that if I hadn't of mentioned it he never would have heard the murmur because it's so faint you'd have to be listening for it specifically to hear it.  This is apparently a very good thing.  He explained the murmur is just the blood flow from heart to lungs make a small turn about before completing the cycle, not necessarily a hole in his heart anywhere.  Completely normal and should be outgrown quite soon.

I mentioned Miss K's new found murmur while we were there, I was disappointed that I was not able to take Miss K with me to this appointment, I'm still not comfortable taking her and the baby anywhere alone since she still needs to be carried through parking lots and public places and the baby also needs carrying, I'm not that talented yet lol.  I wanted to know his thoughts anyway, even if he couldn't have a listen for himself.  He was wonderful about explaining it.  Apparently when a murmur is suddenly heard in an older child it means it has always been there, it's nothing new.  When the murmur is found later in childhood it's an existing hole that was very large in the beginning and the blood flow through it was moving so fast that it makes it sound like a normal heart sound, they are usually seen on an echo if one happens to be done, as the hole gets smaller with the child's growth it is more and more noticeably heard with a stethoscope.  This would be the reason Miss K's EP Cardiologist was surprised to hear the murmur at her last appointment, she has had so many echo's and EKG's that it is strange for them to have not found it before.  I'm not sure what to think here.  In a way I'm relieved they never found it before, but I'm also nervous about it.  If they had seen it on an echo in her first few weeks of life they may have likely panicked and, depending on where it is and how bad it is, she may have been sent in for open heart surgery to close it.  It's a possibility this hole has been the cause of her persistent SVT, if so, and we had had open heart surgery, she may not have had to battle SVT at all afterwards, which definitely would have been wonderful.  But, I am so relieved they did not find this hole and that it did not need repair when she was little.  I could not have handled open heart surgery on my tiny baby and I am very happy we did not have to go through that.  I'm also extremely thankful that this hole hasn't caused any issues with her, other than possibly being the cause of her SVT, it would have been scary to have other issues with her heart.

I'm happy to say I feel a bit better after this little chat with the Pediatrician.  He made it all sound OK, and it's definitely a good thing that this hole in her heart is getting smaller.

On another note...Miss K has made it 4 months SVT free!  This is THE longest stretch we have ever had between episodes.  YAY MISS K!  Here's to hoping this stretch is a very, very long one.  6 months or a year SVT free would be heavenly :o).  Dang, I sure hope I didn't jinx it by typing this up.  Everyone **Knock on wood** a few times for us!

Cardiology Visit

Today went quite well at the EP Cardiologist!  And he was kind enough to take some time to check Little D's heart as well for my own peace of mind :o).

Miss K first...

Still weighing in at 18 pounds even.  And has decided she hates the blood pressure cuff and the EKG "stickers" though she is totally fine with the doctors listening to her heart with a stethoscope lol.  Her EKG is perfectly normal.  Her heart rate was 110 BPM.  Blood pressure was a bit high but she was wiggling through the check so the assistant is sure it wasn't accurate.  The EP Cardiologist listened to her heart extra long today and diagnosed her with having a small murmur :o(, something we did not know before.  But he's not concerned mainly because her EKG is normal.  Now I am concerned though lol, my Mommy brain is working extra hard on it wondering if it's a genetic thing or if it was caused by medications or SVT episodes, etc., etc., etc.  As long as the EP Cardiologist is keeping an eye on her I may be able to relax though, and lucky for us I don't have the time to research it to a large extent and have "Dr. Google" scare me lol.  Miss K is doing great on her 3.2mL Propanolol 3 times a day and 1.2mL Digoxin twice a day.  We have seen no SVT episodes since just before Christmas **Knock on wood!** and the EP Cardiologist was happy to hear it, especially happy to hear it wasn't unexplained, that it was caused by a fever and dehydration and it was easy to break.  We haven't talked to him in person since before he prescribed Digoxin over the phone so today he talked a bit more in depth about his thoughts on that.  He said normally when a child is started on a medication like Amiodarone they are not able to put them on a beta blocker successfully, Miss K is a rare case and he is surprised we have been successful putting her on the Digoxin after taking her off of Amiodarone :o).  So the new plan is to keep her on her current medications and doses and wait and see what happens.  Little did I know this follow up schedule we've been following is not "normal" protocol for SVT patients, to us it is "normal" because it's all we know.  Today our EP Cardiologist told us he usually see's his SVT patients 2 months after initial diagnosis and then every 6 months until 18 months old and then he moves them to once a year until all is well.  Miss K went every 2 months from the day of diagnosis and wasn't moved to 6 month "status" until she was 13 months old, now at 19 months she's still at 6 month "status" unless I feel she is doing great and I'm not concerned about anything, in which case I can push her next appointment to a year.  So, other than her new murmur, Miss K is doing great with her PJRT :o).

Little D...

Birth weight was 7 pounds 4 ounces and length was 18 inches...he's now 5 weeks old and weighs 10 pounds 1 ounce and is 23.5 inches.  He's most definitely growing well, he has Big Brother and Miss K beat on the weight at this point as both of them took until 4-5 months old to hit 10 pounds lol.  We did not do an EKG, the EP Cardiologist did not feel it was necessary today, we did try to get a blood pressure but he wouldn't hold still so we never got a reading at all.  The EP Cardiologist listened to his heart for a good, long time and diagnosed him with a murmur as well :o(.  As of right now he feels it's a normal newborn murmur that he will most likely outgrow.  He does not want any follow up appointments with him, he just told me to ask the Pediatrician if he heard it at his 2 week check up and to ask him to keep a close eye on it himself, if the Pediatrician feels it's a complication he will send us to the Cardiologist in the future.

After hearing that two of my littles have a heart murmur I am concerned about Big Brother.  I wish I could have predicted this, I would have taken Big Brother into the exam room with me rather than leaving him with Grandma in the waiting area, this way the EP Cardiologist could have listened to his heart as well.  Now I plan to take Big Brother with me to Little D's 2 month well child exam and ask our Pediatrician to listen very well and make sure he doesn't hear anything.  Yes, I'm being paranoid Mommy here but I need to know that all 3 of my kiddos are OK.  On a lighter note here, we did have Big Brother checked out by the Pediatrician last fall when he told me his heart was "growling" at him and "beating faster", they even went as far as doing an EKG for my peace of mind and it came back normal, the Pediatrician decided it was more than likely Big Brother's Reflux rearing it's head again rather than anything to do with his heart.  At least we have had a normal EKG reading and I can feel that IF he has a murmur it's apparently not affecting him in any harmful way.  I will update when I get him in to be checked out.

Whew.  What a long day dragging 3 kids around all day, so glad I didn't try that adventure alone!  I asked my mom to come with and she ended up bringing my little sister so I had 4 extra hands and it was a very good thing, Grandma was able to help with Big Brother in the waiting area (my little sister's choice since she didn't feel comfortable waiting out there without an adult {she's only 13}) and my sister came to the exam room with me to help with the two kids, which was a huge help since it ended up being extremely chaotic WITH her help, I can't imagine how much harder it would have been with just me in there!  So glad the day is over, even with the new information and worries, at least we all made it through our first real adventure out of the house with 3 kids lol, not sure I want to do it again for quite a while.

18 Month Well Exam

Miss K had her 18 month well child check-up on February 15, yes that was about 2 weeks ago and I am very late updating about it lol.  Having a newborn plus 2 kids under age 4 has been crazy busy around here!

Miss K is weighing in at a tiny 18 pounds even and is just over 36 inches tall.  She may not weigh much but she sure looks pudgy!  She has rolls and dimples that Big Brother never had lol.  The Pediatrician was impressed with her, he's not a bit concerned with her weight, she's as healthy as can be (aside from her PJRT) and he doesn't feel there's any problem as of right now.  Everything else checked out perfectly.  And speaking of that little heart, thus far we have made it 2 months SVT free **Knock on wood** (lol).  She's had missed or 1/2 doses of her Propanolol a few times due to spitting it out for some odd reason, she's usually really great about swallowing it but on some rare occasions she will dribble it down her chin loosing some or all of the dose.  But these missed doses have not caused SVT (yay!).  She has also had crying fits with breath holding that we were sure would cause an episode but, thankfully, they have not yet.  And she loves to throw major tantrums, she kicks, screams, holds her breath, and throws herself down on the floor slamming her head down with all her body weight (thus making the tantrum worse because then she is also injured and screaming harder from that, go figure!), these tantrums always make us nervous as she gets herself so worked up her heart is racing and she is flushed from the exertion but her little heart keeps a normal rhythm never going much over 120 BPM during these fits.

Miss K has been on the same dosage of her medications since October 2012, nearly 6 months of no medication adjustments is so good for her!  But we have to keep in mind that she hasn't gained significant weight since the last medication adjustment so that's most likely the biggest factor in not needing more of one or the other.  So as of right now Miss K is taking 3mL Propanolol 3 times daily and 1.2mL Digoxin twice daily.

Miss K's next Cardiology appointment is in 1 week, March 12.  I'm excited to hear how the EP Cardiologist feels she is doing.  I am tempted to ask for a Holter monitor to see if she is having episodes we don't know about, I swear there have been a few times I have checked her heart with my hand or ear and it was surely in SVT but within the time it takes to grab a stethoscope her heart rate has changed and I have found that it is beating normal and fine, I really wonder if she is having episodes we don't catch and is converting out of them on her own, this would be a huge miracle for her since she has never in her 18 months of life converted out of SVT without a Physical Maneuver.  But I hope I am very wrong, all I ever hope for is for her to truly be SVT free and eventually outgrow her PJRT!

Somehow we have been able to all stay healthy since our bout of the Flu back in December, again **knock on wood**!  I hope we can all keep up this good health, it's nearly spring so flu and cold season should be coming to an end real soon.  With a newborn in the house I have been extra cautious, I am determined to keep him healthy!  RSV has been so bad this year I constantly fear any illness coming into our home and putting Little D in the hospital.  I am so grateful we are almost past that time of year.

I will be back with another Miss K update sometime next week, I'm sure it will be all great news from the EP Cardiologist :o).

Daddy has Influenza :o(

It's been a long 3 days for this Momma!  I.am.exhausted.  All I can do at this point is pray I can stay healthy through this!

Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose.  Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(.  On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home.  Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays.  Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).

Worse...Daddy came home feeling quite sick Monday evening.  He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat.  Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight.  I hoped this meant he would be just fine but I was beyond wrong.  He came home from the trip hours before quitting time and curled up on the couch to die.  I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can!  The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(.  So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were.  He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms.  It's amazing how one virus can cause every symptom in the book to happen all at once!  This morning found Daddy still on the couch, way too sick to go in to work.  We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(.  And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of.  I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!

Miss K woke up running a high fever of 101 this morning :o(.  She was miserable all day long with a constant fever that I have not been able to keep below 99.9.  She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well.  We can see in her eyes that she does not feel well at all.  And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today.  I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(.  On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o).  And she IS eating, she ate every meal today, even porked out on dinner like she was half starved.  Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well.  Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either!  Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing.  They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.

I have made no less than 4 trips to the grocery store in 2 days.  Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again.  Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.

I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them.  I literally mean every surface has been sprayed multiple times.  I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched.  I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched.  I have become the sanitizer Natzi!  But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been.  It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.

I think after all this is said and done I will need a vacation...alone.  "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband.  It get's tiring real fast.  Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute.  I may end up getting sick just because I'm being ran to my whits end!