Mistakes...

Well we found out for sure. Vaeh has been getting the wrong dose of her medication this whole time. Actually half of what the doc ordered. Believe me, I was NOT happy at all ( & yes, heads did roll!)!! I won't go into the gory details, but lets just say I ended up in a shouting match on the phone with the pharmacist. Then Jon physically went to the pharmacy & spoke to this man & got two different stories inside of 5 minutes... UGH!!!!!

This fella that I ended up "shouting" with was a covering pharmacist... not even the person who normally works. The regular pharm. was there today & got everything straightened out. But they still could not answer how the mistake happened in the first place. So trying to cover, he gave us a gift card for this store. Not sure how I feel about that....

Since she has been getting the wrong dose, & since Revatio is a vaso-dilator, we have to increase her dose slowly. We start tomorrow with 3mL's every 8 hours. Then 2 hours after her dose I have to check her blood pressure. We do this for a week, call the card. office with her pressures, & if everything is okay, we can increase to 4 mL's. I did call the card's office to get parameters for her pressures 95/60 to 99/65. If her systolic goes under 80, we have to call the card.

I'm kinda dreading this, because I remember when Vaeh first started taking revatio she was sooooo sleepy. It took her about 2 weeks to adjust to being on it. Jon & I are kinda hoping that her having been on it for so long, & we're gradually increasing the dose that she won't have a reaction this time:0/ Its a really good thing that I noticed the difference in the dosage. Who knows how long it would have went on if I hadn't spoke up. That, & it just makes me wonder what her RV pressures would have been if she'd been getting the correct dose?! It just goes to show that the only one looking out for our kiddos is us!

As for how we're doing, us girls are enjoying having Daddy home! We went & got a new laptop, as our previous one is on its last leg. We also added to the family again... I'll save that one for another post;0) Plus I've been going shorter, & may go even shorter, with my hair & dyed it darker! I promise if I do go shorter, I'll post staged pictures:0)

Hope everyone else is doing well! A quick update on Mr. Logan... he's home! Thanks for checking in!! Have a great weekend!

One less...

Yep. We are now showing "one less" medication on Vaeh's list. We were able to drop her lasix as of her appointment with Dr. Butto today!!

It was a fairly good visit with our 'friendly neighborhood cardiologist'. Miss Vaeh was an inch taller than 3 months ago at 35 3/8 in., & nearly a pound and a half heavier, weighing in at 29.5 lbs! Her EKG went as smooth as one could go, looking normal (for her;0) & her echo went well, too. Despite the technician seeming to not know what she was doing. It happens every time we go & this particular gal is working. She seems very uneasy completing the echo. I'm not sure if its just with Vaeh, or its like this with all her patients. She inevitably calls for Dr. Butto to come in & he has to show her where things are, tell her what exactly to look for. Today, Dr. Butto came in & had to ask her to redo everything that he wanted to see (tricuspid regurg, her PA's, & the RV pressure)... ugh!

So, her RV pressure has come down some. He said it was 45-50 last time, & today it was 39-41 depending. So we're still on the revatio. The dose, however, is under question somewhat. I asked him to write another refill, because we had run out. He asked me the concentration, which I didn't know - the pharmacy didn't put that on the bottle. After checking her chart, the nurse brought in the script & it had a different dosage than what Vaeh's been on for the last 3 months. So, after we talked about it, the nurse called the pharmacy where we had it filled. They didn't know what her concentration was & why we were instructed to give her half the amount that Dr. Butto wrote. "The person that compounded it will not be here until tomorrow," was the response we got.

WHAT?!?!?!? You mean there's a chance that we've been giving Vaeh the wrong dosage for the last 3 months?!?!?!? So, after letting my blood pressure come down out of the rafters, I'm going to the pharmacy tomorrow to get the refill & get some answers!! Lets just say that if we've been giving her the wrong dosage, heads will roll!!

Other than that, everything went fine & we don't have to go back for another 3 months!! I'm hoping that her pressures continue to come down & we can get her off the meds. Although I'm extremely happy about only having one medication in the cupboard!! That's a first in her life!

So, we're enjoying having Daddy home for the week... hope everyone else is doing well!

Prayers for Mr. Logan:0)

Our little heart friend, Logan just had surgery yesterday & is doing fairly well. According to his blog, he's off the ventilator & into the recovery phase. He could use any extra prayers you could pass along their way.

As for us, just the normal things going on around here. Jon is on vacation next week, so we get to have him around for a whole week! The girls & I can't wait!! Miss Gabby had her kindergarten testing & has orientation the first week in September. So in a couple of weeks, it will just be me & Vaeh here during the day! I'm excited & at the same time dreading it:0/
Miss Vaeh also has her follow up date with Dr. Butto. I'll be sure to let everyone know how things go:0) Hope everyone has a great weekend!!

Littlest Hero's Project... part 2

Okay, I couldn't figure out how to copy any of the other photos that our photographer Amanda sent to me today:0( So instead, I'm posting the link for all of the photos that she's sending me on a disc so that I can print as many as I want! How great is that?!?! Here's the link...

http://flickr.com/gp/momarazzi/j85i13

Okay, & just so y'all know... you're getting to see these photos before Daddy does!! Since he's out on the road & without access to a computer, he has to wait until he gets home:0( He knows that I've gotten the link & that the CD is on the way, so he's quite anxious!

Hope you all enjoy them as much as I did! Let me know which is your favorite & I'll share mine later!

Littlest Heroes Project!

I've been waiting, trying to be patient;0) for the pictures to come in from our photo shoot for the Littlest Heroes Project. I couldn't take it anymore, so I emailed Amanda, our photographer, to see if she had a couple of shots that I could use to put on the blog, etc. She told us after the shoot that it would be about 2 weeks & she would get us the photos. Well, I emailed her yesterday, & here's part of the response...

Aren't they beautiful?!?! I fall in love again with my girls each time I look at these photos! How could you not?! ;0) Despite it being a quite overcast & some what rainy day, they really turned out well. These were outside of the conservatory that we went to for the shoot. I'm really excited now to see the rest of them. She took quite a few photos of the girls inside an exhibit that had bunches of butterflies! The girls were both enthralled with them. I promise I'll share them when I get them!

Part of the reason I wanted a photo was to submit one for the Saving Little Hearts 2010 calendar. They take photos of kids who have heart defects & make a calendar to sell to help the organization. You can click here if you have a CHD survivor who's photo you'd like to submit!

This & That!

I was reading on Kaitlyn's blog today about the FDA approving a new transcatheter valve replacement. Basically meaning that transcatheter valve replacements for RVOTO (right ventricular outflow tract obstruction - usually associated with ToF) patients would be approved for the US. I'm so giddy, because this means that Vaeh wouldn't have to anymore open heart surgeries! Can you say... WOO HOO?!?!?!?! Click here to read the article about the device. They even show a picture of the valve & the catheter that they use to place it.

Things around here are going okay. We've had some frustration with Jon's upcoming physical for his employer. Since he has a commercial driver's license (CDL) he has to have a physical every year. Its been quite a headache in the past as he has sleep apnea. They really crack down on drivers who have this. So, Jon has to sleep with a CPAP & has to have the machine "down-loaded" every year so that they will pass him to drive. Well, he went up on Friday last week & found out that they aren't going to accept things this year without a "maintenance of wakefulness" test. Basically he has to go up to the sleep clinic, they wire him up to monitor him while he sits in a dimly lit room for 40 minutes. During that time, he's not allowed to sing, talk, etc., to try to stay awake. Basically he has to stay completely still & not fall asleep! If he falls "asleep" for more that 10 seconds... he would fail. Lets just say this has been a big thorn in our side. The one good thing is that Daddy has been home since last Wednesday night!!

The girls are doing really well:0) Gabby is getting really excited about starting kindergarten. She's got until September to wait, though, so I think its going to be a long month of August! Miss Vaeh is doing great!! She's really enjoying being able to get outside & play this summer. This is really the first year that she hasn't had to stay inside, so she's getting her fill of the great outdoors!

This past weekend we were finally able to go for our photo shoot with the Littlest Heroes Project. It was a wonderful day! The photographer that we were connected with (Amanda McKinley from Mom-A-Razzi photography) was great to work with. She did an great job of getting the girls into different areas to get shots of them! She even included Gabby, taking bunches of shots of the girls together & one or two of just Gabby! We had the session at the Franklin Park Conservatory in Columbus & it was beautiful!! The girls really loved the "butterfly room". We did pictures both inside the conservatory & outside, once the clouds/rain passed. Then it was onto the Spaghetti Warehouse for dinner before coming home - yummy!! As for the photos... Amanda said that she would have a CD of them to me in about 2 weeks. So once I get them, you can bet that I'll be sharing them!!

On a fun side note, one of my blogging friends Amber (Gracie B's Momma) & her family had a very exciting weekend, too! They were able to bring the newest member of their family home from the NICU!! They are in the process of adopting little Mr. Jacob & he's just as cute as could be! Pop on over the their blog to see pictures of their family!

Thanks for stopping in to check up on us (when I finally get around to posting;0) )! We really love you all!

PS - Please keep McMama, Stellan & their family in your prayers. Stellan is not doing well & is on his way to Boston again:0(

Busy!

Yet another busy week and a half here! Its just normal life here lately, since we don't go back to see the cardiologist until mid August. I'm really anxious to see the cardiologist to see what her pressures have done.

This weekend we had a wedding to go to. A couple of family friends tied the knot! It was an absolute blast to see both my girls running around having such fun! They danced the night away...

Make photo slide shows at www.OneTrueMedia.com

Even Daddy got into the mood, dancing with his girls!


Little Miss Vaeh is growing into such a little lady! She's even trying to wear my shoes ;0)

But you put her into the tub, & she's back to the antics of a normal 2 and a half year old! Watch out... she'll get ya! She's been trying to squirt everyone who comes in the bathroom when she's in the tub!

Its been so fun to do such normal things with her this summer, & not to have to plan our time around doctor's visits. Tonight we may head out to the Armstrong Museum to watch the laser light show. This year is the 40th anniversary of the moon landing & man's first walk on the moon. Neil Armstrong was the first to step on the moon's surface & he happened to be born & raised here in our little town - Wapakoneta. This just also happens to be my aunt's birthday - she was born around the same time they landed on the surface! Of course there's always a festival around July 20th to celebrate our native son's fame & putting Wapak on the map!

Hope everyone is still enjoying their summer! It really seems to speed up after the 4th of July, huh?! I do have to say that I am enjoying these mild temperatures! Its been in the high 70's/low 80's for the past several days & has been cooling off quite nicely in the evenings - great sleeping weather! Hopefully it will stay like this... maybe for good?! (just kidding;0) )

I'm hoping that next weekend I'll have some great photos to share. We are scheduled for Vaeh's photo shoot for the Littlest Heroes Project. I'm really excited to see how they turn out. We're going to the Franklin conservatory, which is basically like an inside garden. This should work out nice so that we don't have to worry about the weather! I PROMISE I'll post some of the photos as soon as I can! Have a great week!!

Here we go again...

Yep, that's right. Another catch up post. I am really a slacker here lately! I guess that's what happens when you get older! Today is my, ahem... 34th birthday. Sigh. (LoL) Its also my sister-in-law's, & my two cousins' birthday, too! So, if you all are reading this post... HAPPY BIRTHDAY!!!

So, back to the catching up. We've been having fun around here! We're trying to get things ready for our fish tank, so that we can get it set up vs. sitting in the garage. I still need to get some stone for it (about 90lbs. more) & get the filter situation figured out. So, maybe by... Christmas we'll have fish in it (LoL)! Believe it or not, the MUCH smaller tank we have, we actually have 3 of the little glow fish that have lasted nearly 2 months, which is a record around here ;0)

The girls are very normal! Fighting like most sisters do... so nice (in its own way) to have such normalcy around here!

Of course, we had quite the weekend with celebrating the holiday, & the multi-faceted birthday party! On Friday, we went down to our church for the annual 4th of July celebration. They've been having a little festival of sorts for the last 10 years or so. It started as just a church function, but has blossomed into a full blown carnival. They have free hot dogs, hamburgers & chips. They also have funnel cakes, cotton candy... all the typical carnival stuff. Usually there's a show in the sanctuary for the kids, then its on to the fireworks! They are some of the best in our area. Here's some pictures ...

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Poor Vaeh... screamed after the first one went off & Jon had to take her inside. It was kind of cloudy, so the noise level was a little higher. All in all, they girls had a wonderful time! Then on the 4th, it was a surprise birthday for one of my birthday-sharing cousins. We had a nice time just chatting with family.

Today I plan on catching up on things around the house. What a way to spend my birthday, huh?! Hope everyone else is enjoying their summer!

Catching up...

I have really been a slacker lately! I hope you all will forgive me... please?! We've just been hanging out & enjoying the summer. Nothing much really going on around here. Thankfully every one's been fairly healthy. Although Daddy had a nasty ear infection that landed him in the ER a couple of weeks ago, & now I'm brewing one (they're so NOT fun) & I had a lovely gallbladder attack the other night. Oh well, at least the kids are healthy! Only typical bumps & bruises that accompany summer!

Here's a few photos to catch up on the past few days. Last weekend I traded off days of helping my Mom & aunt's out with decorating. I went & helped set up on Friday for a reception while my cousin Erica came up & stayed with the girls. She has a little boy & girl, so the kids had a great time playing with their older cousins (Leslie & Jake). Then on Saturday it was a repeat of Friday, except that I stayed with the kids while Erica went to help decorate. They all had a really great time playing together. It was quite "busy" in our house those two days (ie: noisy, cluttered!)!

Oh, while all the little one's were here, we found out that our kids are miraculous! They were walking on water!!! Let me clarify...

They were having a blast running "on" the water ;0) We recently got a big fish tank (more on that to come in a future post!) & Jon filled it up to make sure it didn't leak before we put it in the house. So they were running through the drain off water from the tank.

Here's a couple more shots from the weekend...

Gabby couldn't wait to feed Emma!

Little miss skinny legs showing her stuff!

Sharing a root beer float with Daddy!

Happy Father's day, Daddy!

We were supposed to have the photo shoot with the Littlest Heroes Project this weekend, but with the weather supposed to be HOT we decided to reschedule, considering its an outside shoot & Vaeh (& the rest of us) don't handle the heat too well. I'm waiting to hear back about that.

On Sunday, however, we're going to celebrate my Grandpa's 80th birthday!! We're having a picnic type get together with our family to celebrate! I can't wait! I promise I'll put up pictures from this weekend, & when we get our fish tank up & running I'll put pics up of that, too!

Hope everyone else is doing well. Our little friend Elijah is home & recovering quite quickly from spine surgery! Also, our friend Krista is scheduled to have her little man July 1st! How exciting! Also, please continue to keep a beautiful little guy that Amber & her family have taken in. He remains in the NICU.