Friday, March 18, 2011

We are scheduled...

I feel so out of practice. Vaeh's cardiologist's office called yesterday when I wasn't at home, so I called back to schedule today. I had been praying that we would be able to do this cath at the hospital Dr. Butto is based at, but I found out today that it has to be at another hospital, across town, which we have had some trouble with how they've treated Vaeh in the past.
She is scheduled for noon on Thursday, April 21st. We're not sure yet when she will have to go in for her pre-op testing, possibly the Wednesday before. But knowing that she is the afternoon case, I'm hoping that we will be able to do it the same day... but I'm not holding my breath:0/
I've had a flood of emotions already with this one & its only been scheduled for a few hours. I think knowing that he may balloon her pulmonary arteries has me a bit more on edge... its always such a difficult process for him to get access to her PA's (thanks to that lovely octopus in her chest that's comprised of her PA's). The last time she had ballooning, it was a marathon 4 hour cath... ugh.
It does work out that Gabie will be out of school those days for spring break, so that at least takes one thing off the "to do" list. I just don't like having to explain this to my 4 year old... she's getting to big & understands now. Let the fun begin :0/

Tuesday, March 15, 2011

Upcoming...

So we returned for Vaeh's follow up visit with Dr. Butto yesterday. She was first on the list, so we buzzed right in & right through, until we had to wait for Meghan ;0) She's one of the gals that does the echos & she is fabulous w/ Vaeh:0) The echo went well, with Vaeh actually cooperating quite well through the entire thing (usually she starts to get a bit squirmy toward the end) Believe it or not, the little stinker actually grew about 1/16th of an inch & gained a half a pound in 4 weeks... wow! At this rate, she's gonna be 7 foot tall! Okay, maybe not quite that tall but she can slow down a bit in the growth dept! She's even been asking about when her teeth will begin to fall out... ya know, since Sissy is loosing her teeth;0)
Dr. Butto came it to look at her echo & said that "in effect" nothing has changed! Her pressures have remained the same even without the revatio. He had actually expected them to spike a bit, he told me later. Everything looked great! I then had to ask the looming question... are we looking at a heart cath? I think that Dr. Butto wasn't feeling the greatest, because he gave me a somewhat blank stare. Then he told me we would go back to the clinic in Lima in 2 months, & we'll do another heart cath between now & then. So, sometime next month we'll be heading into old familiar territory.
Its been 2 years since Vaeh has had to have anything done, so this is gonna be a strange experience. Although since this is number 7... we'll probably slip back into it like riding a bike - unfortunately :0/ I'm really dreading having to explain things to her this time, since she is old enough to understand so much more than the last time she had to have anything done. I am praying that it is able to be done at our favorite hospital... I know it will be a much better experience there:0)
For now, we just enjoy life without meds. No more syringes sitting by the sink, ready to give her meds (for the first time in over 4 years, I have my counter top back:0)). And we wait to see when this next round is scheduled for...

Wednesday, March 9, 2011

Winter Fun!



Isn't she just adorable?! Okay, okay. So I'm a very biased opinion here - LoL! This photo is from a couple of weeks ago when the kids had a snow day on a Friday. This was followed by another unexpected day off on Monday due to flooding. We had gotten about 7 inches of snow on Thursday night/Friday morning, which was followed by a spring-like warm up with a couple of inches of rain. All of the melting snow followed by 2.5 inches of rain = lots of water! This is what we had to deal with on Friday (which the kids thoroughly enjoyed, I might add!)...




And this is what we had to deal with on the following Monday...



This was taken at our high school's football practice field. You can see the 'sleds' they use for tackle practice halfway under water. Thankfully we live far enough away from the river that we weren't affected. My in-laws were a bit closer to the action...


Their house is just on the other side of that large evergreen tree on the right side of the photo. Quite the change over the course of a couple days, huh?! Gotta love Ohio weather... okay, well you don't have to love it, just deal with it if you live here!
So this particular Friday, we were actually able to get outside & enjoy some snow time & the girls were able to build their first...


snow-bear?
She started out as a snowman, but this snow was so wet & dense, that the moment you picked it up it hardened! We had to mold this lovely instead of rolling her, so we added a few touches here & there... bam! Our first "snow-bear"! The girls both had a great day & enjoyed themselves playing outside. Especially since it was the first time they'd been out all winter:0)

Since that day of fun in the white stuff, we've had, ah-hem, a "nice" couple of days bonding with the couch. Vaeh started off early Thursday morning, around 1:50am, throwing up. She was up all night repeating the same. Gabie got up around 3 & didn't fall back asleep until around 4:30am. I was debating keeping her home from school, when she made the decision for me. She followed her sister's game plan & started throwing up around 6:30. So, thus began my day of consoling my girls while they were not feeling so hot. Gabie ended up with a long weekend, missing school both Thursday & Friday. They both did pretty well on Saturday, until early Sunday morning when Gabie decided she wanted just a bit more attention;0) She had me up around 2 on Sunday, but was pretty good the rest of the day. So Monday morning rolls around & I figured we're finally back on track... WRONG! Vaeh decided to get sick one last time when she got out of bed... UGH!!! Guess she figured she needed a couple more days at home with Momma!
She finally headed back to school this morning & was ecstatic! As an added bonus to her return to school, her teacher also returned! Mrs. Raymond had been out a couple of weeks after she took a fall outside of the school one day when it was icy... & subsequently broke her nose! She's finally back on the mend & was in class today:0)

So next Monday marks our two week anniversary with NO MEDS! Vaeh has been doing quite well. There really haven't been any major changes with dropping the meds. I do find myself looking rather closely at things... does she look a bit dusky? Are her lips/nail beds purple? It stinks, because it really has me second guessing everything that she's been doing lately. Then tonight at supper, my Mom remembered to tell me that last night she & Vaeh were running to catch up to Gabie (Mom took the girls to Gabie's roller skating party for school since it was MY turn bonding with the couch:0/) & Vaeh told her the "I can't breathe." Wha...??? She said she recovered very quickly, & really didn't seem phased by it at all. She's been fine since. So now its a moment of "do I call the cardio or just wait since she's scheduled to see him in 5 days?"

After thinking about it, we'll probably just wait until Monday for her appointment since she's been doing fine other than that one, isolated incident. I'm praying that her appointment goes well & if we schedule a cath, that it will be soon!