Tidbits

There's an interesting post on my LearnAboutCHD blog today if you're not a regular reader of that blog and have a kid with a CHD. Sarah, a virtual friend I've made, is an adult with TGA and is writing a 3-part series on what it's like to grow up having a CHD. Check it out!

Also, updates on friends...
- Harlie's surgery was rescheduled till next Monday because of technical problems (robot was down)
- Amanda is feeling the effects of chemo, big time. The good news is she may get to go home soon. Bad news is she feels like hell. Keep her in your thoughts, as well as her hubby and little boy.
- My friend Karen's little girl, Jameson, has her next open heart surgery on May 15... coming up soon. They need all the strength they can get.

Thanks to everyone who asked about them and is sending positive vibes their way!

Think of Harlie...

My friend Christy's little girl, Harlie, that's become such a rock star on this blog is in for her Nissen (stomach) surgery this morning. Please keep her in your thoughts and prayers and send positive energy her way. Her future surgeries depend on this one going well!

Sisters

Hangin' out in a toy bin on a typical Thursday morning around 6 am. All the toys had been taken from the bin and littered through the living room already. You will note some sort of orange substance on Sadie's face and PJs if you look close enough. And Katie's stopped talking only long enough to smile for the camera. The nonstop litany of 5-year-old conversation started the second the flash was gone. And fighting quickly ensued.

But they did look like adorable little angels together for a moment.

Good Report from the Cardiologist!

Yay - finally some good news to report! Sadie had her cardiology appointment today, which we'd been dreading/anticipating anxiously the last couple of weeks since her poor x-ray and pulse ox incidents. It looks like her pulse ox levels were down to some sort of respiratory infection or other ailment, but not because of her heart.

According to the cardiologist, her coronary arteries look great, there's only mild stenosis of the pulmonary vein (to be expected - will have to be watched and may one day require a stent, but for now is a-ok) and her right ventricle pressures look very good (her right ventricle has to be in good shape as with her condition it is responsible for the normal left-ventricle function). These are the three key things to watch with TGA patients as they develop, and all three areas look good. Even better news... there is no sign of pulmonary hypertension any longer. He said it's quite normal for it to abate after surgery and ample time to heal. Hooray!

He also said her pulse ox will run mid-90s frequently, and it's nothing to be concerned about. I had been incorrectly told at UVA that she'd be 99-100, and it simply isn't true. Especially when she's congested, has a chest cold, etc. She was running 96 today, which he was perfectly fine with . If it gets down in the 80s, then we need to double check, otherwise, she's good to go for another year before she needs another echocardiogram.

I also had an opportunity to talk to him a bit about my feelings, recent findings and insurance issues with UVA, which has been a sore spot for me since it was he who told me the only place to send Sadie was UVA. He explained his reasoning, and I agreed we made the right choice for Sadie, but implored him to respect his patients enough to give them options and explain risks more clearly. Though it is a time of shock and stress, often, when he meets with them, I still feel it's essential to have all the information in front of you so that you can make the best decision for your child. He was very kind, agreed to give more consideration to this and thanked me for my frankness. Good guy.

It's amazing to me every time Sadie's had an echo to see that little heart pumping, it's valves moving, the blood flowing. It reminds me of how far we have come since the day she was born, and what a miracle she is. It reminds me of how lucky we are to have her screaming, hysterical little self as part of our family. And it reminds me of all the people who came together to save this one little life. There I go getting a little weepy...

Enough... we're off to the park to celebrate!!

Local news

Here are the photos from our local newspaper (The Mechanicsville Local) this week.

This, apparently, is big news. The annual Shuck N Pull. Rigged up lawn mowers, men camouflaged so that they don't scare the oysters away, and old women in cartoon bikini shirts. Does it get ANY better than this?

Since moving to Bubbasville, we've found little to do in our local 'neck of the woods.' However, one of our favorite pastimes (that we rarely get to imbibe in) is going to the local BW3s to play trivia and a series of Local games... 'best mullet,' 'tallest hair,' and 'best use of camouflage' being resounding favorites. There's no better place to watch the action in our neighborhood

Send Positive Mojo to 'Manda

On Monday my friend Amanda was diagnosed with leukemia after having several weeks (well, really a few months) of weird symptoms that doctors kept dismissing. She's in for the battle of her life, so please keep her in your thoughts/meditations/prayers/whatever you do to send universal love.

Mixed Bag

Sooo... lots happening, and this is more for family and friends that care to read it, so feel free to skip this post if you aren't interested in our mundane daily life.

Sadie
Took her in again Friday, still running low grade fever. Was diagnosed with (sigh) an ear infection. Isn't that why I went in the first place? This time her pulse ox was 99, where it should be. She's very congested, so perhaps that's something to do with it. To clarify everything we're going to her cardiologist Friday. Hopefully we can get some answers and (cross your fingers) a clean report.

The Harlie Fundraiser
I'm happy to report that the total raised was $56,000!!! Thanks to all of you who sponsored my run or donated and to you guys who went the extra mile and did some fundraising yourselves. Big props to my sister-in-law Kim for her Kaiser group, Jamie and the Ashland Jaycees and my friend Jen in sunny CA for going the extra mile to get donations. (Not that I wasn't touched by everyone who gave - your gifts were incredibly generous!). Harlie seemed to enjoy the occasion, and I know her parents are very, very happy, grateful and relieved. She's gearing up for a Nissen surgery later this month, and jaw surgery in June, so keep her in your thoughts/prayers.

My First 10K
In context with the Harlie fundraiser, I ran my first 10K. I did not train before hand, and I really, really wish I had. I meant to, just didn't quite get there. I managed to get through in 1 hr 22 min, and was disappointed that I hadn't pushed myself earlier on. I stopped and walked around half a mile in mile 2, and I think I could have made it without stopping in hindsight. I'd just never run 10k before, so I had no clue how my body would handle the later miles. Turns out that this fat butt still likes to run, and once I got going again in mile 3 at a good pace, I was ok. Slow, but jogging. I was pumped up by the time I crossed the line, and kind of got teary just knowing that I'd done something I'd never done before... on my own. Next year I hope to recruit a few to run with me. In the meantime, I'm thinking I should get back into running and try the 5k next month. I'd forgotten how much I enjoy long runs. Thanks to Amanda for letting me snag your bib. Hope you feel better soon and can get back to running.

Insurance, Insurance, Insurance!!!!
SADIE IS INSURED AGAIN! After months of being uninsured (and previous months on only a "supplemental" plan), we finally found a company to insure her! I won't say who it is, because I don't want to jinx it (they clearly coded her wrong in their system, but I'm not saying a WORD!). But we're covered, and covered pretty well in terms of insurance options available. A recorded message called Thursday with the news and I cried. Seriously. There's a first - crying over a pre-recorded phone message. I'm becoming a total sap these days. It's just in time, as we have to get Sadie into the cardiologist next week, which isn't cheap.

The agent who worked so diligently to find insurance we could afford and that would accept Sadie is Tammy White. I'm putting in a shameless plug here for her - she went 10,000 miles beyond the call of duty to help us out. She also has a child with a CHD. If you've been screwed by insurance like we have, I highly recommend her:

Tammy White
Vice President/Benefits Specialist
Chas. Lunsford Sons & Associates
800-777-5773

I'd be remiss not to say here that I owe not only our insurance solution, but also the balance billing removal to a local "heart" mom and friend, Christy Davis, who is the co-coordinator of Mended Little Hearts here in central VA. She's given me advise that has literally saved our family from financial ruin, and I can't thank her enough. Christy, I owe you... BIG time!! Thank you, thank you.

I have more, but will save for later dates, as some (such as the Sadie's heart tissue donor) take much longer to tell. Thanks for checking in!

The Operation Sadie Had

OK, two posts in one night, moments apart. But I just came across this on a fellow CHD mom's blog and had to post. This is the surgery Sadie had in order to survive. Hers was not as simple as the Arterial Switch Sadie underwent, as in addition to TGA she also had two holes in her heart (ASD and VSD) to repair, plus complications with lung issues before and after.

Warning: NOT for the faint of heart, the squeamish or those that freak out over surgery videos (That means you, Mom!). This is graphic.

Tough Day

Sadie went in to the doctor today for what I thought was yet another ear infection. The ear was red, but not bad, but what was not good was her chest. It turns out her 02 Sats are lower than they should be (highest they got was 95) and her chest sounded icky, so we were sent to the hospital immediately for an Xray to see if it's pneumonia or something having to do with her history of pulmonary hypertension or heart. Good news (I guess?) is that it's not pneumonia. Bad news is that we don't know what it is. The doctor called me a few hours later and said that we should get the xrays to her pulmonologist (which we don't have and I only recently found out we should be seeing) and cardiologist. It was after hours, so I have to call the cardiologist tomorrow to see what's up. I don't know if this is a "big" thing or not, as the pediatrician's voice mail told us that "nothing specific turned up, but you should follow up". Does that mean there's something? The pessimist in me says yes, as she wants us to see someone else (specialist). The calm attitude about it all with the underlying urgency is alarming, and my bells are going off all over the place.

Sadie's had a couple of spells in the last two months where her lips turned blue, but always when she was cold, so I wasn't too worried. Then, recently she's been panting a lot, but I chalked it up to allergies, which she appears to have (stuffy nose, sneezing, itchy eyes). Now this. Hopefully it's nothing, but I am anxious to get to a specialist. I've discovered through the whole CHD awareness campaign stuff that our care and follow-up post-surgery has been less than adequate through UVA, and I plan to address that and get some answers to the current issues. I just hope and pray it's not a leaky valve, stenosis, or whatever the "maybes" are. None of them sound nice. I'm crossing my fingers for this to be a serious case of over-zealous pediatrician. Please cross yours too.

Katie, as always, was a little champ about it all today. I could tell it was bothering her because she kind of clammed up at the xrays and after. Tonight we talked for quite a while (while dressed in our finest princess apparel) and she told me she was scared and didn't want Sadie to be sick or go to the hospital. We talked about it, and I think she's ok, but she's one serious (and insightful) little girl and takes in more than I know I even realize.

Speaking of Katie, I have a scene from our daily life to share...

"MOTIVATION"

Setting: on the floor in her bedroom, playing Barbies. One of hers is pregnant.
Katie: My Barbie is fat. She is having a baby.
Me: Katie, it's not nice to say someone is fat when they are pregnant. Having a baby inside you is very special, and the baby makes your tummy big because he or she needs room to grow. It's a miracle, and you should never make a pregnant mommy feel bad by saying they look fat.
Katie: Mommy, I'd never say you are fat. You don't have a fat tummy.
Me (knowing she is lying on the tummy part, but pleasantly thankful for her sweet reply): Thank you, sweetie.
Katie: I'd just say your tummy is HUGE.
My exit stage left, as I go to look up Weight Watchers online. Again.

Out of the mouths of babes... (ugh!!)

What I don't have...