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!



Cora's Story

I was just directed to this blog by some other Congenital Heart Defect mom's on Facebook that I follow.  It is heartbreaking.  There are no other words for it.  I hope this story on her blog is enough to make everyone see how common CHD's are, and how deadly they can be if not detected.  Please read it, it's short and only takes a few minutes to know her whole story.  It's important.

I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.

I also have quite a few friends and family who know our story and still don't believe it's such a big deal.  I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is.  I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now.  I cannot imagine life without Miss K.  Every day I think about Miss K's first week of life.  Every day I read at least one new story (new to me anyway) about a CHD child.  Every day I am amazed at how clueless I was about CHD's before Miss K.

This could happen to anyone.  It does happen to 1 in 100 families.  It is common.  It can be deadly.  Please educate yourselves.  Be prepared.  Know the signs and symptoms.  And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way.  It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth.  Too many babies are sent home with an undetected CHD.

I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy.  Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes.  My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses.  It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers.  If, IF, there is anything wrong with your baby's heart this should show some sign.  I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.

Ok, here is Cora's Story.  Be prepared, you will cry, especially if you are a parent or parent to be.

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...


Teething Pain...

And SVT :o(.  This post was meant to come out on Monday (6-18-12) but things have been crazy around here so writing it up is as far as I got lol.

I swear every time we go through teething Miss K has more episodes, she has such a hard time dealing with severe pain and I'm now finding that pain causes her heart rate to go up and if the pain is bad enough it causes SVT :o(.  Tonight we took the kids out to the pool to swim for a bit before bedtime and while we were out I could feel Miss K's heart beating quite fast so I closed my eyes and placed my hand over her heart and sat and "listened" with my hand, it was obvious she was in SVT :o( so I had to tip her back (yes right there in the pool lol!) and blow in her face, it only took one try and she was out of SVT (see Physical Maneuvers).  Apparently she wasn't in it very long (she has a history of being harder to get out of SVT the longer she's in it) and apparently it wasn't a very bad episode as she didn't act much different than her usual self.  But still it was an episode :o(.

I guess we need to prepare ourselves to deal with at least 1 (quite often 2) SVT episode each month from here on out, because that's what she's been averaging since January.  Hopefully the older she gets the less we'll see, with any luck we may get to a point where we'll only see breakthrough SVT when she needs a medication adjustment instead of just randomly without explanation, or in today's case because of some type of discomfort or pain.

Other than teething pain Miss K has been doing wonderfully since our last update :o).  She is finally deciding to crawl, mostly, and loves being able to get around easier than she could rolling.  She is also quite feisty and full of mischief.  When anyone does something she doesn't like she shakes her hands at them, gives a dirty little look, and yells "uh!" it really is quite cute though we hope she doesn't keep the attitude past this cute baby stage ;o).  When eating she is known for pushing our hands and the spoon away from her face and yelling "no!" when she's not up for another bite, another cute attitude from her that we hope doesn't stick.  She's also an adorable flirt and can get any stranger to look her way and comment on how cute that baby is.  She has her Daddy, Big Brother, Grandpa and one of our good buddy's wrapped around her little finger very tightly, all four of them would do just about anything for her.


Miss K is 10 Months!

I can't believe our baby girl is turning 10 months this weekend!  Time sure flies, I just wish we could freeze them in time, or command them to stay the way they are forever and have them obey lol!

Miss K is a beautiful, always happy, always smiley, little flirt of a girl and we absolutely adore her for it.

We had her 10 month Cardiology check up today and it went VERY well.  She weighs 16.4 pounds with a cloth diaper on, so probably 16 pounds even.  I'm not happy about her lack of weight gain these past months but nobody else seems bothered by it so I guess she's fine.

Remember our missed Propanolol dose last month?  And her 4 SVT episodes in a short 2 week period?  Well, Miss K's EP Cardiologist was EXCITED to hear we had accidentally skipped a dose and that she had breakthrough SVT...say WHAT? yes I wrote that correct, he was excited!  I was quite shocked.  He was excited because it's really the only way to know if the Propanolol is doing it's job or not, also a great way to find out if it's the Amiodarone that's doing all the work instead.  He was very happy to hear that she experienced no less than 4 SVT episodes in the 2 weeks following the missed dose, this means the Propanolol IS doing it's job and that she IS 100% dependent on it and that the Amiodarone may not be needed at all.

We talked about our plan of action for the future.  Right now Miss K is taking 6 ML Amiodarone once daily, at one time this was a HUGE amount for her tiny little body but as of today it's now a very low dose.  They recommend 5mm Amiodarone per Kilo in weight, Miss K's 6ML dose is only 1mm per Kilo.  We will not be adjusting her Amiodarone dose, it's staying where it is.  Miss K's EP Cardiologist will be taking her off of the Amiodarone in August for sure, no question about it, he is dead set on this decision.  He has decided he absolutely does not want her to be on the Amiodarone for more than 1 year.  He is confidant we may start experiencing more SVT episodes monthly without it but as long as we can get her out of it ASAP and easily he is not concerned.  If Miss K's SVT episodes end up being more than we can handle then he wants to try putting her on Sotalol and Flecainide instead of Amiodarone, if this works then great but if not then he'll be putting her back on the Amiodarone.  Can you see me jumping up and down in celebration?  If not you should be able to hear me screaming with excitement because I am LOUD!

Because Miss K has not outgrown her PJRT and is most definitely having persistent episodes of SVT it is a positive thing that she WILL NOT outgrow her condition :o(.  2 months just isn't enough time for that and after 1 year it's not going to happen for sure.

The EP Cardiologist adjusted her Propanolol dose from 2ML to 2.8ML three times daily.

Miss K will be going back in to see the EP Cardiologist in August when he will take her off the Amiodarone.  She'll wear a Holter Monitor a month after that to see what her heart is doing without the Amiodarone and then we'll go from there.

Miss K got what may possibly be her last blood draw done today as well (See Side Effects).  The lab technician was great, she got the vein on the first try and the blood drawn before Miss K really got to cry.  It was smooth and easy and Miss K left with a bright green BandAid to match her green and yellow outfit she was wearing.  I'll update later after I hear the results from her EP Cardiologist.

Oh, and an update on my last post:
A day or two after I posted she popped out of her tired slump and became her happy little self again, actually a more happy and giggly little self than before.  I think she may have just been growing, or even more possibly fighting seasonal allergies.

Lots of great news today, it was a good day.  Among all of the great news I was happy to get to receive it alone with Miss K, we got lucky enough to get to leave Big Brother and all his distractions at home with his Auntie and Mommy was happy to have some quality alone time eating lunch out and going to the Dr. just Miss K and I :o).