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.


A Cute Photo...

I was reading about a cute baby boy named Ryker who is dealing with Heteratoxy, born in March 2012, and came across a cute little picture of him that reminded me of Miss K so I found one of Miss K's hospital pictures and guess what?  They are very similar photos lol!  Here is Miss K in her first few days of life :o):


Story Time...

Since I don't have much to update about (always a great thing with Miss K) and it's been quite a while since I posted last I thought I'd share a few stories :o).

In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers.  She brought a few friends along and we had a lot of fun talking and sharing life stories.  When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business.  I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair.  Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!"  Then she turned to her friends and said "this is that baby that came in last summer!  The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah!  We remember that story!  You guys were sure she wasn't going to make it!"  Miss K has been quite the talk of the town since her scary SVT beginning!

About a month or two ago we were at Home Depot picking up some supplies.  At checkout the girl was so nice and talkative.  She saw the baby carrier in the shopping cart and asked if she could see the baby.  Our conversation went sort of like this (though for sure not word for word, lol):

Checker:  Boy or girl?
Me:  Girl (lifting the cover)
Checker:  Aww!  She's so cute!  And so tiny!
Me:  She's actually kind of chunky, almost 16 pounds!
Checker:  How old?
Me:  Almost 6 months.
Checker:  Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me:  Yeah, she was quite tiny to begin with.
Checker:  My baby was 5 pounds 14 ounces.
Me:  Wow!  My baby was 5.12!
Checker:  My baby was delivered via emergency c-section.
Me:  Mine too!  Her heart was beating too fast.
Checker:  My baby's was too!  Does your baby have SVT?
Me:  Yes she does!  Your's does too?
Checker:  Yes!  She was life flighted to Primary Children's last fall in heart failure.
Me:  I'm so sorry!  Is she alright?
Checker:  She's great, she's now on heart medications.
Me:  Our little one is too.

We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other.  Quite the coincidence to run into another SVT mom right here in town!  Even more crazy that her baby is not much older than ours.  It makes me wonder what is in the water here, lol!

We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness.  While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked.  I told him she had SVT and he got all excited, not uncommon lol.  He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast.  He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER."  He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT.  Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!

We had to take Daddy to the after hours clinic to have a Strep Test done last week.  While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible.  He completely understood and of course, being a doctor he wanted to know what her condition was.  We told him she had SVT and he immediately got curious.  He then asked, "wait, is she the baby that was in the ER here last summer?"  Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great.  I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone.  Yup, Miss K was definitely the talk of the town.

Miss K is doing great :o).  Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark?  Time goes WAY too fast!).  I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).