Friday, August 28, 2009


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!

Monday, August 24, 2009

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!

Friday, August 21, 2009

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!!

Monday, August 10, 2009

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...

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!

Tuesday, August 4, 2009

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!