MRI Results...

I'm going to write about a lot of our experience only because I want it recorded for my own benefits, if you wish to skip to the results feel free, I won't be bothered by it, in fact I'll never even know lol.

Miss K woke up cranky today, she did not want to be up, she wanted to sleep.  I can't say that I blame her, I wanted to stay in bed as well ;).  She couldn't eat solid foods after 3:00am, we kept her up the night before until 10:30pm trying to get her to eat, eat, eat.  Truth is she's not a snacker, she prefers 3 meals and that's it, so getting her to eat until 10:30 was near impossible.  She was allowed clear fluids and Jell-O until 9:00am so her breakfast was Jell-O jigglers and apple juice...it didn't go over well at all, not that she was mad at what I was feeding her, just that she is not a breakfast kind of kid, she never eats more than a tiny bit each morning and getting that much in her is tough.  She had a few tiny bites of the Jell-O then played with it, can't blame her there either, Jell-O jigglers are fun to play with ;).

We arrived at Primary Children's Hospital right on time.  Miss K was just great with the pulse ox and the blood pressure cuff, she's used to these and didn't mind them at all.  The nurse wanted to use an under the arm thermometer, Miss K wasn't having that though!  The nurse suggested under the tongue instead and Miss K opened right up and allowed that for some odd reason.  Next comes the IV...Miss K knows exactly what those are, she knew immediately what we were doing the second we tried "assuming the position", so to speak.  A lot of violent kicking and screaming, it took 3 of us to hold her, I had her chest to chest with me, both of her arms tucked under each of mine with one nurse behind me finding the vein, one in front of me holding Miss K's arm, me squeezing as tight as I dared and Daddy holding her legs down because, darn, those little legs are strong!  She was using them to push away from us all and doing a pretty darn good job of it!  So much struggling commenced that it took almost 10 minutes just to get her hand properly prepped and the vein raised, then another 5 or more minutes getting the IV in, and because she was already worked up and ticked off at us all she kept screaming and struggling through the tape being placed as well.  Once we were done they brought a treasure chest and let her choose a prize, the only girl toddler friendly prize in there was a Cinderella puzzle, thank heavens she was thrilled with it...Note to self:  find some great little girl toys and donate them to PCH for their prize boxes...

IV in and ready and we're taken back for the MRI.  They had me snuggle Miss K while they pushed the sedation medication through her IV, they had to double check her charts and make sure to use a certain medication though because their usual medication interacts very badly with Digoxin.  Miss K fought the sedation hard, once we thought she was out she started thrashing around, we got her settled and assumed she would be fine and then I realized there was a safety pin in her pants (yes, she's tiny, every pair of pants she has that isn't adjustable waist must be safety pinned, or taken in with sewing, so they don't fall off of her non existent hips and bottom), I majorly disturbed her removing the pin from under her back :(, she wouldn't calm again after that so the nurse had to push another medication called Versed, this one knocked her out in seconds and she didn't even twitch.  The nurse assured us Miss K was completely fine, she would watch her 100% of the time, but the MRI was going to take 30 minutes or more and after that we would be stuck in recovery with Miss K for another 2 hours so she pretty much forced us out of there and commanded we go get some lunch so we'd be better ready for the long wait later.  I very reluctantly left my baby in their, hopefully, very capable hands and we ran down to the cafeteria for some food...wow, can I just say "flood of memories"?!  I almost couldn't handle that cafeteria and it's food today, every terrible memory from 3 years ago came back to haunt me down there.

We made it back into the MRI recovery room just as they had gotten Miss K settled in there.  They wanted her to sleep at least 2 hours straight to make coming out of the sedation a bit more pleasant.  Lucky for all of us it was Miss K's normal naptime at that point and she was more than happy to stay asleep, in fact she slept soundly without a stir while the little girl right next to us, her bed was touching my shoulder, was screaming at the top of her lungs and putting up a huge fuss about waking up from her sedation, it was so bad the nurse was practically begging the parents to take the little girl home, she was sure their child was just fine and would be better in familiar surroundings but the parents were not so sure and just stuck around, I know everyone in there was very relieved when they finally left after over an hour of listening to that sweet girl scream.

Miss K slept the full 2 hours just great, and amazingly she woke up quite easily and very happy, in fact she was quite goofy and out of her wits and it was a bit entertaining as well as unsettling, it's not fun for a mom to see her 3 year old act so out of sorts, even if she's happy doing it.  Miss K did great, she ate a whole popsicle on her own, this is not normal at all, she hates cold things and normally won't touch a popsicle.  She also ate cereal for the nurse and drank juice just great.  We were released quite quickly with our only instruction being never to leave her alone in the next 24 hours and never to leave her with any siblings or sitters for 24 hours.

Miss K started her screaming and thrashing as we got into the car, she did this for about 20 minutes, constant screaming and thrashing about in her carseat, we couldn't calm her no matter what we did.  But after 20 minutes she decided to eat more cereal and fell asleep while chewing (it's OK, I watched her close, she did not choke), she slept the rest of the way home.  Since getting home she has been very unbalanced, she can't walk straight no matter how hard she tries, and she's still acting quite loopy, doing silly things and acting very crazy.  She's also very visibly tired and should sleep easily tonight.  Otherwise she's doing fine, heart rate has stayed perfect from beginning to now.  We did have another bad parent moment today and completely forgot to give her her afternoon Propranolol :(, but I don't feel it's a bad thing with all the sedation medications in her that are slowing her heart rate.

Before results I will update a tiny bit about her past week.  Last Wednesday Miss K started taking Cyproheptadine for her migraines.  They had us start out at 1/2 dose for a week to get her body used to it then we went up to a full dose, in the very short week of just 1/2 a dose I already noticed a HUGE improvement in Miss K.  She only complained of her head hurting just 2 days and both times were first thing in the morning before even getting out of bed so I'm not sure it was even migraines but rather waking up making her feel a bit off, after breakfast each day she never complained of her head again.  Miss K's comprehension and speech has changed quite a bit in the past week as well, she's a lot more attentive and seems to understand more and she is a lot happier and a lot more active.  I feel terrible realizing that her headaches were more than I even could comprehend, from the way she acts they must have been pretty constant and pretty debilitating :(.  I'm still leery about the medication, I really don't like giving my baby girl medications and adding one more makes me nervous, but the outcome already has me thinking this is a really good thing.

Our Pediatric Neurologist is just as awesome as our Electro Physiologist!  She received the MRI scan within just a few hours of it happening and she called me barely an hour after we left the hospital...frustrating enough my phone decided not to ring at that moment and I missed her call, we were left stressing over results until after 5:00pm, 2 hours later, before she finally had another moment to call me back.  The MRI showed no reason for the migraines and no reason for seizures, also no seizure activity at all.  Both these things are GREAT news and really what we wanted to hear...but now we're left to wonder what in the world is causing Miss K's migraines?  Also the MRI revealed a very interesting find, not life threatening and not debilitating in any way present or future, just interesting, as the Neurologist says.  Miss K has an old Stroke in her brain, apparently it is very old, the Neurologist says it happened when Miss K was a tiny baby and that she very strongly feels it happened during Miss K's 48 hour long SVT episode that we were unable to break during her PICU stay.  It makes sense, I can't imagine that episode NOT causing some sort of damage in her little body.  This does bother me, a lot more than I've let on thus far, a Stroke is not something you want to hear your child has had for whatever reason.  But the Neurologist was very reassuring that it is not anything to worry about.

And there we have it.  Miss K is having migraines, it's apparent she really is, after seeing such great results from her migraine medication.  But there is no apparent cause for the migraines, we're just left to wonder and treat.

Thank you, everyone, for you love and support and prayers today, they were most definitely felt.  Somehow I was a lot more calm than I thought I ever could be today, I strongly feel it was all your prayers, thank you.

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.

10 Months SVT FREE!

And we're walking on egg shells.  Waiting for the ball to drop.  Panicking.  Preparing.  And all at the same time while we're also thanking God, rejoicing, feeling blessed, hoping and praying.

Almost a whole year SVT free.  We never thought we'd see this.  Of course, we know we need to consider the fact that Miss K has only gained 1 pound in this whole past year and just maybe her medications are just working really great because she's not getting heavier.  But we can always hope that maybe she has outgrown her PJRT, or is slowly outgrowing it at any rate.

Miss K is still taking 3.2mL Propanolol 3 times a day and 1.2mL Digoxin 2 times a day.

The life of an SVT baby:

Syringes all over the house, both dirty and clean.
Medications piled up in her room, out of reach of course, but still visible so we don't forget to give them.
Empty medication bottles and boxes throughout the house, always at least one in the trash can on trash day.
An alarm set on both Mommy and Daddy's phones so we don't forget her afternoon Propanolol.
Stethoscopes in every room, though they are rarely used lately they are still there.
Heart rate App on both Mommy and Daddy's phones (cardiograph app).
Our favorite local pharmacy knowing Mommy's face and name, knowing exactly what I am there for each month.
Our favorite local pharmacist knowing and usually remembering without fail that Mommy prefers the Propanolol in 2 small bottles rather than 1 big bottle and that she prefers the prescription label for the Digoxin be placed on the bottle rather than the box.
Miss K understanding, and allowing, us to "hear" her by placing our ear to her chest and listening for a few seconds.  (done about twice a day)
Miss K understanding, and allowing, us to place a hand over her heart and holding still long enough for us to feel her little heart beat. (done a few times a day)
Miss K knowing the word "medicine" and knowing exactly what it means.
Miss K having medications such a huge part of her daily routine to the point of her reminding us when it's time for medicine even when we forget.
Miss K finding play syringes in a dress-up doctors kit and telling her baby doll "time for medicine!" while putting said syringe into her baby doll's mouth and pushing the plunger.
Miss K finding play stethoscopes in a dress-up doctors kit and placing it on her own chest to listen and then placing it on her baby dolls chest, somehow putting it in the correct location every time.
Having to tell Grandma "No" for sugary sweets and drinks even though the other grandkids all have them at the moment.
Finding Sugar Free popsicles and treats in one Grandma's house set aside especially for Miss K.
Having to remind Grandpa's and Uncle's "no tipping upside down!" and "no tossing high into the air!", these things have NOT caused SVT yet but we aren't willing to chance it so we just plain don't allow it.
Doctors appointment reminders for Cardiology coming in over the phone every few months, set in Mommy's phone calendar, and written on the family calendars all over the house.
Avoiding illness like the plague, more paranoid than the average parent, praying to avoid fevers at all costs, staying home all the time, rarely getting an adventure at any public place especially during cold and flu season.
Being familiar too with Primary Children's Medical Center.

So many more things I could list if I could remember them.  But we'll take all of it to get to keep our sweet little princess!

Lately I have been feeling so blessed, and then so guilty, about Miss K's last few quiet months.  The guilt comes from knowing a few other sweet PJRT babies who are not as lucky as Miss K yet, they are still enduring a lot of trial and error with their medications and such and dealing with SVT and frequent Cardiologist visits.  Though I know we have been there, Miss K was not been spared these trials in the slightest, but I almost feel like it's not fair that she is now mostly healthy and SVT free when they are still struggling daily :(.  We pray for them all the time, and worry until we hear good news from them.

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.

Miss K Update

Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back.  I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.

And the verdict is...

Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.

The conversation was a bit discouraging and brought a lot of questions to mind.

The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.

IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP.  She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her.  The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before.  They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.

I have cried over this for a few days.  I'm trying to be hopeful the Digoxin will work, I really want it to work.  But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.

The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me.  He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more.  I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?

The bills alone are terrifying to me.  If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely.  But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.

Having a 3 year old son at home and being 7 months pregnant is also terrifying.  I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones.  We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable.  Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.

And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl.  There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay.  They will not get her to stay in a bed for any amount of time other than sleeping.  She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital.  All I can see is stress.  And tears.

We can use all the prayers we can get that we can avoid the hospitalization option!!!!  I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."

On a bit of a lighter note.  Daddy and I have been in search of a good, reliable Pulse Ox device to purchase.  We have not had much trouble finding them but we have had trouble finding a good price that fits our budget.  The ones that are most affordable are not as reliable with pediatric patients as we need it to be.  It took us over a year to finally decide to break down and purchase one.  We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more.  But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two.  Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter.  A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe.  Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.

SVT

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

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

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

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

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

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

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

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

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

**Added Note:

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

It Seems I Spoke too Soon :o(.

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

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

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

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

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

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

Miss K is 1 Year Old!

I can't believe how fast time has flown.  My teeny, tiny 5 pound 12 ounce baby girl is now a chubby 17 pound 4 ounce one year old :o(, I love to watch her grow and change but I also just want her to stay little forever.  We feel so blessed for all the prayers we have had answered and all the love and support we have had from Miss K's very beginning.

In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more.  But we made it through it all!  Through everything Miss K has always been happy and smiling, nothing can get her down!  She is our light, she brings so much happiness and love into our home.

So onto her Cardiology check up today :o).  Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress.  He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her.  We are supposed to keep what is left just in case but she does not need to take it anymore.  It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it.  He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing.  It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help.  And NO BLOOD DRAW today (see Side Effects)!!!  We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).

The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O.  He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it."  He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days.  He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system.  It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant.  But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.

We have some great parties planned to celebrate Miss K's first birthday :o).  She is going to feel quite spoiled.  Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her.  This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family.  And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).

Just a little look back on how far we have come with Miss K:

August 8, 2011.  Just mere minutes after birth.  Those purple little feet and hands make me so sad.

About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(.

Almost 24 hours old, still nice and pink and doing well :o).

6 days old and day 2 at home and doing great!

7 days old, hours after being admitted to PCMC.

One of the first days in PICU at PCMC.

PICU

Home?  You mean this isn't home?  And I get to see this place called "home" tonight?!?

Day 4 home from PCMC and nearly 1 month old.

2 months old.

3 months

Always smiling at 4 months

5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it.

6 months

7 months, her famous cheesy toothless grin.

8 months, one of my favorite smiles :o).

Our sweet 9 month old

Quite an energetic 10 month old

11 months, nearly 12 months.  Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now.

Miss K's Eye Appointment

Miss K saw the Ophthalmologist for a follow up today.  It was a short and sweet visit thank heavens, especially after our horrible start to the afternoon.

I am ashamed to admit I had a "worst mom of the year" moment today :o(.  When getting out of the truck to head inside Primary Children's Medical Center for Miss K's eye appointment I somehow hit the "lock" button on my keys and left them on the seat, I was looking for my sling to carry her in and in my frustration of not being able to find it I shut the door her seat is next to and went around to open the other door only to find that it was locked, and so were the rest of the doors :o(.  Miss K was still inside buckled in her carseat and the keys were on the back seat next to her :o(.  I called Daddy in a panic asking him what I should do.  He had me try to open the back sliding window but it was latched shut and I was not strong enough to force it open, I got in the tool box and found a screwdriver to try forcing the window open but still couldn't get it.  We also have a slim jim in the tool box for such occasions but I have no idea how to use it so I wasn't willing to take more time working on getting in there on my own.  It was about 110 degrees outside and I could see Miss K was already getting flushed from the heat :o(.  I was parked on the far side of the building and it was quite the run, as fast as I could go, into the hospital to the security desk.  When I got inside I told the security lady that I had locked my baby and my keys in the truck, she didn't even hesitate as she got on her radio and yelled "there's a baby locked in a truck outside, get your slim jim and get your butts out there NOW!"  I told her I was sorry but I couldn't wait inside so I described our truck and where I was parked and ran back outside as fast as I could so I could watch Miss K from the windows and keep an eye on her.  I waited for about 3 minutes (though it seemed like FOREVER)  and the 3 security guards, including the lady from the desk, came running to our rescue.  It took them less than 1 minute to get the doors unlocked for me.  I was so grateful, the tears I held back through it all almost fell at my relief.  Luckily Miss K was only in that hot truck about 10 minutes before we got her out and she didn't start to panic and cry until just before security arrived to help, of course she was extremely happy to be rescued and turned out to be just fine, a bit red in the face from heat but otherwise fine.

Now on to the rest of the afternoon.  As soon as Miss K was rescued we ran in to her eye appointment.  The 1-2 hour appointment that I had anticipated turned into less than 30 minutes as they got Miss K back almost immediately and chose not to dilate her eyes since they had done that last time.  The Doctor was impressed with her yet again and reports that she is doing great and here eyes look perfect :o).  He doesn't wish to see her again unless taking her off the Amiodarone doesn't work and she ends up back on it.  I, of course, reassured him that this wouldn't happen and told him that as much as we liked and appreciated him we would be glad to not ever be back :o), he agreed.  (See Side Effects)

Then we had to head to the Pharmacy to pick up Miss K's medications.  Amazingly there was not a wait there either.  The pharmacist was still not able to explain why we're only getting 28 days out of a 30 day supply, they are baffled and couldn't tell me anything other than "hopefully this time it will stretch to 30 days like it should."  I'm not happy with them but there's really nothing I can do about it.  We left the pharmacy to sit in the hallway and give Miss K her Amiodarone since she hadn't had it in 2 1/2 days and I was instructed by her EP Cardiologist to get her dosed ASAP today when I picked up the medication.

I was amazed to be back home so quickly, we left home at 2:00pm and arrived back into town at 4:30pm.  It was a great thing though since I am still shaken up about locking Miss K in the truck in the heat :o(.

Primary Children's Medical Center Blog

Miss K made it on Primary Children's Medical Center's blog for their Story Lines section!  Her story is being spotlighted for others to read, share and relate :o).  Head on over and check it out!

http://primarychildrenshospitalblog.org/2012/06/22/story-lines-little-miss-kimber/

Medications, medications, medications...

That seems to be the story of our life.  "Has (Miss K) had her Amiodarone today?" is always asked by Daddy making sure I am on track and me helping Daddy to remember when he's being Mr. Mom for the day.  "Did you remember to give (Miss K) her Propanolol?" another question asked by me or Daddy at the end of the day.  "Don't forget to give (Miss K) her Amiodarone at ____ oclock and her Propanolol at _____oclock." is what I have to tell Daddy and/or any other sitter (if there ever is a sitter since we never leave her alone with anyone) when I'm not around to make sure it's done myself.  Whenever I need to be away from the kids during a medication administering time I am constantly sending text messages to the adult in charge of my baby making sure she was given her medication, that it was the correct dose, that she took it well, and that everything else seems to be going OK.

This week has been a medication issue as I've found that for the 3rd month in a row we are 2 days short on her Amiodarone...what gives?  How is it I'm paying for a 30 day supply and the bottle says there is enough for 30 days but at 28 days we are completely out?  Go figure.  I called PCMC's pharmacy and asked them these questions, they couldn't tell me anything.  Their records show that they are giving us a 30 day supply for 6ML's a day so they don't understand it either.  I was told I need to bring the bottle in with me so they can see what's going on, seriously how is an empty medication bottle going to help them solve this puzzle?  Oh well...the point is we will be out of Amiodarone this Thursday instead of Saturday.

Which leads me to our next problem.  Miss K has an eye appointment on July 2nd, that's this coming Monday.  But she's going to run out of her Amiodarone on Thursday.  This means 2 trips down to PCMC within 4 days of each other :o(.  We really can't afford the fuel to do this with our F-350 diesel engine truck, the only vehicle we have.

So I called the EP Cardiologist today and asked what I could do to not need to drive down twice...amazingly he was very understanding about it.  I thought maybe we could just give her a bit less than the normal dose all week to make the rest of it stretch until Monday but instead he suggested we use it all up, every drop, giving her the exact prescribed dose and then when she runs out he said to just skip the next few doses until we can make it to the pharmacy.  But I was given strict instructions to get right to the pharmacy on Monday, fill it and give her a dose immediately.  I am so relieved to have that figured out.  I am kind of leery skipping 2-3 doses but I'll do it since the Cardiologist suggested it.  He was OK with it since he's taking her off of it in a month :o).

On a side note, we had another SVT episode this evening :o(.  Miss K was acting kind of out of sorts and was reddish in the face so I asked Daddy to check her heart and sure enough she was in SVT.  She came out of it quickly though, which is great :o).  It seems she may be having more and more episodes per month though :o(, I sure hope this does not mean taking her off the Amiodarone will be an epic fail...

Eczema

Miss K has Eczema.  She's had it since her first week officially home from PCMC.  And believe me, it's not just small patches here and there, like my son and I have, it's very large patches on larger body parts.  Her worst area has always been her upper back and shoulders, when not treated effectively it gets looking pretty awful.  She also gets it fairly bad on her chin, neck and cheeks.

After weeks of using one thing after another on her, trying to at least make her comfortable, I found Aveeno Baby Eczema Therapy Cream accepted by the National Eczema Association.  We had tried Baby Aveeno Soothing Relief Moisture Cream that is a bit cheaper than the Eczema one and it seemed to only make her worse.  After just 1 day of the Eczema Therapy cream her skin looked SO much better, after a week it was like she didn't have Eczema at all, as long as we rub her down with it at least once daily that is.  This cream is not cheap.  I've been purchasing it at WalMart, paying about $11.00 for a 7.3 oz tube that only lasts about 3 weeks.

I'm currently looking for other options.  If there is anything out there that could work as good for even a little bit less the cost I would LOVE to know about it.  We have made 2 recent attempts with new creams since finding the Aveeno.  Attempt #1 was homemade cream that my mom found a recipe for, we thought it would work as well or better since it is quite greasy and makes your skin smooth and soft instantly keeping it smooth and soft for 1-2 days after only one application and the total cost to make enough to last about 2 months was about $10.00.  It didn't work for Miss K :o(, after just 2 days of applying once daily her Eczema was back with a vengeance, I swear she was having an allergic reaction to something in the cream as well as an Eczema outbreak.  I quickly went back to using the Aveeno, and just like I expected, her skin cleared up after just one day.  Attempt #2 I am currently trying, it's called Good On Ya' Skin Treat given to me by a friend I work with.  She doesn't remember where she got it, she bought it for her son who has sensitive skin but he wouldn't use it and she's had it for at least a year just sitting in her cabinet.  She gave me this cream to try in hopes it will work.  The problem is I looked up the website to see pricing because she couldn't remember what she spent on it...OMG, it's NOT affordable.  I REALLY hope she did not spend $60 on this 9 oz container.  Hopefully she can remember where she got it so I can go price check there if it works.  So far we are on day 3 of using it and her skin has stayed clear and glowing, I won't be surprised if does end up working, it's because it costs so much, she's turning out to be a very expensive little girl.

My newest concern though is a rash she has developed under her chin.  It started out to be 2 or 3 pencil eraser sized spots close together then grew to about the size of a dime within 24 hours and looks a lot like bad Eczema.  It has been a week since it first appeared and in that week it has spread and has so far not responded to any creams I have on hand.  As of tonight it is now covering a quarter sized area under her chin and has progressed to the right side under her cheek and down her neck, it's now in her two creases in her neck and there are new spots appearing on her upper chest just at the base of her throat.  I'm almost sure it's Eczema but I am a little worried about it since it has so rapidly spread, the lack of response to my usual (and some new) creams and ointments is a little worrisome as well.  I have given this rash one more day to clear up and used one of my last few options on it all day long, it only seemed to get worse as today progressed though.  Tomorrow morning I'm hoping her Pediatrician will be able to fit her in, I'd like for him to look at it and make sure it is Eczema, and then I hope he can give me some new ideas for treating this new outbreak.

Note:  I typed the above late last night and rather than change anything I'm just adding here, I took the pictures this morning and noticed the rash has moved to her right cheek and the corner of her right eye, what was on her neck and chest appears to be worse than it was when I put her to bed last night.  I contacted her Pediatrician and was able to schedule an appointment for her this afternoon.

These are the best pictures I could get of Miss K's chin:

Any Thoughts? Advice? Suggestions?

I'm not sure if this is heart related or not so I thought I'd throw it out there and see if anyone else has noticed the same thing with their heart babies.  Miss K is well known for holding her breath a lot, not when crying or any time she's upset and not to the point of passing out (I know a lot of healthy children who do this and know it's quite common), she just does it while playing or jabbering most often when blowing raspberries or spitting at us she'll just keep blowing and blowing to the point that we would normally need to take a breath and start over again, we've counted and she usually doesn't stop to take a breath for over 15 seconds.  It doesn't seem to bother her in any way.  She is also known for doing it while breastfeeding, it's like she forgets to take a breath or forgets what she's doing and she'll suddenly start choking and gasping for air, this is something that was at it's worst when she was just a few months old now that she's 7 months she's been doing it less and it's not as dramatic or traumatizing but still worrisome for me.

About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month.  The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone.  I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days.  I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her".  So we planned to go back in 10 days to refill again for a 30 day amount.  Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision.  Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days.  The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it.  It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.