Thursday, March 26, 2009

Happy Trails Amanda... I'll miss you.

Saturday I had planned on running in Amanda's honor. Sadly, I'll be running with her memory, instead. Tonight that young, old friend spread her wings and left me behind in the dust. Though she's been sick for a long time, the loss was still sudden, and I feel blindsided - unready to say goodbye.

I've spent all evening reading old notebooks full of our childhood scribbles. Looking through scrapbooks and photos. Wishing she were by my side to laugh with me at our antics, terrible senses of style (hers was WAY cooler than mine, even back then) and countless secret phrases about anything and everything. I can't think of what to do to memorialize her, to really say what I need to say - to cut to the heart of how much I'll miss her.

So instead, I offer up a list of my top 10 favorite moments, ones that embodied a friendship that lasted a lifetime, and will last beyond.

  1. (sung to "Yesterday" by McCartney) "Leprosy... all my skin is falling off of me... I'm not half the man I used to be, oh I can't live, with leprosy" - Our response to the demand for a church camp skit.
  2. Stupid elevator games, to freak people out.
  3. The one and only movie I've ever walked out of - The crying game. We bolted after a few scenes and headed for another theater.
  4. Convincing my parents The Cure was a Christian rock band so that I could go to the concert with her. A lie I'll never regret (sorry Mom).
  5. Amanda and Adrian's wedding. Never in my years of friendship had I seen Amanda so happy. To this day, I've never seen another couple so well matched, so in love, so perfect for each other. My heart aches for his loss.
  6. Singing a duet to "Our God" - man I thought we rocked on harmonizing that. I used to get goosebumps over how good we were. Ha! (Amanda was a great singer, I was not). I still think of her when the TV commercials for "inspirational" songs come on with that tune.
  7. Inscribing our memories into the rafters at the top of the girls' bathroom at our camp. I need to take a trip out there to see if they're still there. Although it would kill me if they weren't.
  8. Fruit Loop Prostitute and Honeycomb Hooker. I won't bother to explain.
  9. Skipping out to 7-11 for Blueberry New York Seltzers. I think the two of us alone should have been enough to keep the brand alive.
  10. Alastair... her legacy. Sharing pregnancy stories, birthin' fun and mommy pride.
There are so many more. Almost 20 years worth of friendship can't be caught in ten bullet points. But I'm overflowing with emotion right now, so this will suffice.

See ya in Wonderland, Alice. I'm going to miss you.

Tuesday, March 24, 2009

Kid News

Because you care...

Sadie's officially potty trained - hooray! She's made it two days with only accidents while sleeping (actually, no accidents today). It only took about two months of potty requests every 30 minutes or so. Piece of cake (ha!).

Sadie's latest bed time routine is to force Jason or I to lie in bed with her and "tuddle". She gives kisses and hugs, pecks on the nose, strokes our hair and sometimes sings "Tinkle Tinkle Wittle Star" or "Some-whayw Ober da Rainbow". Then she turns over and says "I'm done sleeping with you," which is your clue to get out of the toddler bed you just folded yourself into and leave.

Soccer's back in season! Katie's on a team with two of her favorite friends this year - both boys. Already she's playing better than last year, and loving her team. Last year our team had a whiner or two, which quickly became a cancer in the group - all the kids whined and cried throughout the season. Day one of practice, and they were rockin' and rolling this year. We switched over to Dynamo from Richmond Strikers, and love the organization and direction they offer. Big change - for the better.

Katie has apparently inherited my entrepreneur gene. She's started a club for kids her age, which she designed herself. She wants it to "be fun at first, then maybe someday she'll have lots of them and make money like you[I] do." Poor thing - if only she knew how little I made from my endeavors she'd run screaming the other way.

Wednesday, March 11, 2009

Equal Exchange Fundraiser for Three Oaks

OK, shameless plug here.

Three Oaks Montessori (our little preschool) is hosting it's first ever fundraiser through Equal Exchange, a fair-trade cooperative that creates a direct, transparent food system that empowers small-scale farming communities throughout the world. In a world full of Walmart distribution and ownership, small-scale, local and organic farmers struggle to compete. Our students learned about the continents this past month, tying in the theme with our fundraiser.

So, if you'd like to buy any items, we have the following for sale. I've sampled most, and can vouch for them (especially the cranberries, coffee and chocolate) - they are outstanding!

5 oz Cranberries
Whole, juicy cranberries infused with organic sugar and slowly kiln-dried to preserve every last bit of flavor. $ 7.

5 oz Pecans
Plump pecans are perfectly roasted and salted to bring out their full flavor characteristics. $7.

Organic Green Tea, 25 bags per box
A healthy and invigorating tea made from premium unfermented Darjeeling tea. Popular for its antioxidant qualities and low level of caffeine. $4.

Coffee, Organic Mind, Body & Soul
Medium & Vienna Roast, 12 oz. A smooth blend with mild acidity and characteristics reminiscent of dark chocolate. $10.

Only a few items remain of each, so they're first come, first served. Thanks for any interest, and sorry for the commercial!

Monday, March 09, 2009

Birthday Fun

Sunday was my birthday, and it was one of my best (at least Saturday night was!). My sister planned an awesome little surprise party, full of some of my favorite people. I had a blast hanging out, visiting with friends and just letting loose. So much fun, in fact, that I woke up Sunday feeling a bit blue that it was over so quickly.

The past year was one of my toughest in so many ways. I took risks that didn't pay off, stuck around when I should have walked away. Ran away when I should have clung on. Made more mistakes than may seem humanly possible, yet learned more about myself and why I'm here. I'm not sure where I'll end up from all the experiences, but feel forces of change working in me to open up parts of me that have been dormant for years. Nothing like a good kick in the butt to get you to re-examine your path in life, I guess. And a few good self-help books to get you back on the right track. Blah, blah, I'll stop now.

So, another year under the belt. I look forward to the year ahead with both excitement and trepidation. There are a lot of changes in the months ahead (aren't there always?). I'm not ready to talk about them, but suffice it to say I'm hanging on for the ride of a lifetime. Great things are in the works, some things are complete unknowns and others are ripe with emotion. I can't even write or verbalize at the moment, so if I seem distant, please bear with me. I'll be back in time.

Tuesday, March 03, 2009

Snow Much Fun!

Look Mommy - SNOW!

Yipee!!!!


Our backyard the next morning - we woke up to 9" of snow.
Carly Sparkles Crystal loved jumping through the drifts.

Don't let the smile fool you. Sadie loved the deep snow for about 10 seconds. Then she erupted in nonstop screams all day - the snow was so deep that it came almost to her waist. Every time she fell she couldn't get back up. She was like a turtle turned over on its shell - except much, much louder.

Time for some sledding fun!

Katie the snowgirl.

Why one should not use blowpops for a short snowman's eyes.

Our Snowman 09 - go Hokies!!


Over the past three days we've sledded, had snow ball fights, drank at least a gallon of hot cocoa and built the best snow woman (Katie insisted) ever. I'm exhausted, but in that warm, fuzzy good way that comes from too much outdoor fun!

Tuesday, February 24, 2009

Hooray for Second Opinions!

Today was specialist day - first the cardiologist for Sadie, followed immediately by ENT/plastic surgery for Katie. For the first time in a long time I can say that both went fantastically!

After a lot of deliberation (2 1/2 years worth, to be exact) I finally took the plunge in switching cardiologists. I had a certain amount of sentimental attachment to our previous pediatric cardiologist simply because of the road we had gone down together. That said, he often was abrupt, failed to provide the full picture and belittled my questions. He's a great doctor, but just not the right fit for us. So, we moved on to Dr. Allen with the MCV group today. What a big difference!

Dr. Allen spent time reviewing Sadie's case, clarifying some muddy areas for us and talking about her recent blue spells. It turns out it's fairly normal, and a benign condition. She's just one of those kids that do this - not because of her heart issue. Her heart, he declared, is beautiful - a prime example of one of the best switch operations he's seen. Her anatomy was such that it made the switch an "easy" (if there is such thing!) operation, and he thought Dr. Peeler, her surgeon, had done an outstanding job. All good news! I was shocked with the amount of time he spent with us in reviewing her history and today's echo. Kristen, you're right, LOVE him! Thanks to all my heart friends who recommended the switch. I felt a bit like a "cheater," but after today's experience know I made the right decision. The sum up for the visit? Sadie's heart healthy and raring to go!

After dropping off Sadie at Three Oaks and picking up Katie from her school, we headed over to the ENT office for a second look at the bump on her face. I hadn't been satisfied with the "we think it's this" answer I got previously, and was not at ALL satisfied with "anyone can perform the surgery." I love the doctor who told us these things, but couldn't rest easy with either answer. So, we asked one of his colleagues who is an ENT and Plastic Surgeon (Dr. Burke) to take a look and possibly perform the surgery. One look, and the charming (did I mention British accent?!) Dr. Burke felt it is not pilomatrixoma. Based on the lab pathology, texture and appearance, he thinks it may be an infection of the lymph nodes caused, possibly, by MAC (which is neither a virus or bacterial infection). We're going to take the less invasive approach of doing up to four weeks of a different antibiotic to see what happens. He was hesitant to perform surgery on the location due to it's proximity (or possible location of) the salivatory glands and lymph nodes.

Slowly I'm becoming a more educated advocate for my kids. I'm realizing I don't have to run home and look up words that weren't explained (I can ask), and that I don't have to trust the first opinion I get. It was harder to get to that point than I realized - I think, though I like to believe otherwise, that I have a really tough time with change. I didn't want to hurt either physician's feelings or imply that they were wrong - yet if I hadn't taken that leap we'd be in surgery on Monday and I'd be worried to death with Sadie's every sign of cyanosis. Progress, baby. Progress!

Thursday, February 19, 2009

The results are in...

Katie's biopsy results came in last week. Over the phone the nurse told us that the results showed a benign growth, but that an appointment with our doctor would be needed for further discussion. So I pretty much knew what was coming when we got to the ENT's office this afternoon.

I guess I haven't previously posted what's going on with her. She had a red bump appear on the side of her face in early November... her pediatrician noticed it and asked about it. I had seen it too, and assumed it was a pimple or bug bite. Then I noticed a small black "spot" in the center of it - barely a speck. December was a whirlwind, but I noted that the bump began to change, turning purplish-red. The pediatrician put her on antibiotics to get rid of whatever the culprit was (and at the same time kill the strep she was in that month for). Late December came and the bump was more pronounced and the pediatricians referred us to an ENT. The ENT took one look and sent us for a biopsy - he said he frankly had no idea what it was.

The good news is that the infected-looking nodule on the side of Katie's face is not malignant, however it is a tumor. They suspect it's a case of pilomatrixoma, a tumor "composed of cells resembling those of the hair matrix, which undergo 'mummification' and may calcify." It doesn't look quite like what our doctor has seen and it's developed rather quickly, but he's young, so I take that with a grain of salt. I'm beginning to get used to being the screwballs with the "rare" presenting case.

Dr. Sally was wonderful in talking to us at a level that was over her head when needed, but at her level for what she needed to know. He made one fatal error though - he said "operation" instead of "excision" at one point in the conversation. Katie was a ball of nerves from that point on, breaking down into tears the moment he left the room.

I don't think any kids are thrilled about the prospect of an operation, even a "minor" one such as this. Katie, however, is terrified of them. One has to remember her short little life's experiences with operations and the scars they left, the stress on the person and those around them, etc.

As a parent one never knows the right way to comfort kids. In this case, I just let go and let her get it out. We've been talking about it all night. Really, it's not a major surgery - it's minor in the grand scheme of all thing surgical. In fact, I'm thinking it might be outpatient, but I'm unsure as it does require full anesthesia. But for Katie it's scary as hell, so I'm working on validating her feelings but at the same time educating her on what, exactly, will happen and how very different it is from her frames of reference. I'm sure to screw her up somehow, but I hope it's not on this one.

I think I need to sell our story. Our freaky health cases are at least good enough for an episode or two (or three) of House.

OK my medical-world friends, I have a quest for you. I asked the doc where the best place to go for her surgery was, and he said it didn't matter, anyone could do this - scarring would occur no matter who does it, but it will be a small one (1 inch or so I think). Still, I've learned not to trust doctors on their referrals or lack thereof. I trust my friends who've been through these things much more. Suggestions? Anywhere/one I should avoid?

Saturday, February 14, 2009

Counting Out Change

I was at Hallmark this morning, getting a last minute card, rushing through the motions of a commercial holiday I'm not a huge fan of. I got into line to pay, seconds behind an elderly man.

He placed a single card on the counter. "This is for my true love," he said to the cashier with a wink. "Today is our anniversary!" The cashier asked the obligatory "how many years?"

Seventy one.

He pulled change out of his pocket, and began to count it. As he did he mentioned that time went too fast. Next week they are moving into a retirement home. Things changed, but one thing remained the same, their love.

Tears filled my eyes when he looked at me and smiled his little old crooked smile and wished me a happy Valentines.

I got in the car and drove away, trying to hold back tears for so many reasons. I wished I'd asked him more. I wanted to know his life story. I imagined their moving through the times, life.

But most of all, I thought of the change he used - mostly nickels and dimes, to pay for that Hallmark card. One by one, adding them slowly as I took in the moment. Now that, my friends, was a Valentine to remember.

Happy Heart day!

Wednesday, February 11, 2009

C'mon... enough already!

Sadie's still not up to par. We're trying to get her into a new cardiologist ASAP.

Tonight we had plans to have dinner with some friends. On the way out the door Katie let it known that she has contracted the stomach bug going around her school. Poor thing has thrown up 7 times in 6 hours.

Really, the sick stuff is enough. I'm SOOO ready for spring!

I'll have to back post some CHD-related items later... too worn out tonight.

Tuesday, February 10, 2009

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!

Monday, February 09, 2009

CHD Awareness Week Day 2, 2009

I'm totally bummed I can't make it out to CHD Lobby Day tomorrow. Sadie's got something that looks a lot like pneumonia, PLUS my lead teacher is sick at the school. Feeling a bit blue about it.

Check out yesterday's CHD Blog entry if you haven't. It's by a friend, Josie, (5 Minutes is the title) and it's amazing. If you're a parent who's ever been through a life-death situation with a child, you will totally relate.

That's all I've got in me tonight. I've got my mind on lots of people who need support and energy for tomorrow - the Reynolds family (daughter Charlotte, 3, has brain tumor) and my friend Christy and yet another big appointment for Harlie tomorrow. Send some good mojo their way.

Sunday, February 08, 2009

Awareness Week

It's CHD Awareness Week again! In the past year I've met many heart patients and parents, medical staff and support groups, many of whom I know will be lifelong friends. I created the CHD Blog (check out today's entry - an amazing post by my friend Josie!) as a neutral information dissemination tool, and it's really taken off. But I wanted to do more.

This time last year I, for the life of me, could not understand why there were such paltry efforts at a national awareness campaign. I didn't get why there were so many groups, with animosity between some.

Well, now I know. I jumped in full steam last year, volunteering with a variety of groups, testing the waters to find out who was out there, what they were doing and how I could help. I worked on national efforts for cohesion and strength within the groups. I spent a lot of time trying to mend fences and bring people together. I spent even more time behind the scenes working on projects that no one else had "time" to address. And in the end, after all the work put in, I threw my hands up in frustration and stepped back away from most of the groups I'd so willingly jumped in to help. Why? What caused me to back away from something I feel so strongly about?

I've been asking myself that very question. And I think I hit upon the answer My efforts last year didn't amount to a hill of beans in the bigger picture. In the process of giving my time and energy, I encountered many negative people who diverted my attention from the reason I'm working so hard at this. And in that, momentum was lost. I wonder how many others have walked that same path - I know I'm not alone.

And so this year, I'm readjusting my focus. My pledge for the next year is to find new and innovative ways to contribute. To surround myself with positive and hopeful heart warriors like myself and to ensure that my efforts are more guided and focused, really targeting and impacting the need for awareness, which in turn will lead to greater advocacy in the health and government systems and stronger research funding. I think I'm on the right path, and feel good about that.

As with last year, I'll be posting an entry every day, CHD related, during CHD Awareness Week. This year will be a bit different from last - no long lists, no big plans. Just open talk and interesting articles about life with CHD. And to kick off the week, I'd like to share a video that's been circulating lately...



Tuesday, February 03, 2009

She's a Dancing Machine

After a week of fighting a mutant virus and a not-so-fun biopsy today, Katie was granted the privilege to do anything she wanted tonight. I braced myself for shoe shopping, a horrid children's movie or dinner at the dreaded CiCi's, but her request surprised me. An at-home dance party followed by ice cream sundaes. This, I could happily provide.

But, as the evening wore on, I wore down. It was a long day, week, month. I just didn't feel like dancing. I knew I had to follow through though, so after dinner we went about our preparations - moving all the furniture out of the way to make room for our disco arena. The music came on. Sadie broke out some smooth new moves she's acquired of late. Katie astonished me with knowing a large portion of "867-5309" (really, she barely knows her own phone number!). And I found myself in stitches, working the grocery cart, getting jiggy with the cabbage patch and doing some ad hoc instruction on grapevine basics (hilarious with a two-year old).

It didn't take long to wear everyone out. The girls created their own sundaes, complete with everything from Magic Shell to whipped cream and sprinkles. Then we all collapsed and watched some Tom and Jerry reruns, getting in a few tickle fights and some cuddling before bed.

Really, does life get any better than this?

And so, my first real resolution of the new year... - Dance, Dance, Dance!

Monday, February 02, 2009

Blog Interview...

A week or so ago, I was offered a chance to participate in The Blogger Interview, and took the challenge laid down by Steve (the awesome co-blogger at The CHD Blog) on Adventures of a Funky Heart. Now it's my turn to paste here and offer someone else the chance to get in on the fun! This one is heavy on the CHD side... I'm gearing up for CHD Awareness week (Feb 7-14!). Your interview could be about anything...!

The rules: The interview(er) (me) gets to ask you five questions. You answer, I post it on my blog. You also post on your blog, FaceBook or wherever, and become the interviewee for another friend/colleague. Who wants an interview? I can do some creative questioning!! ;)

Were you a blogger before you created the CHD Blog?

Yes, I have a personal blog, Herding Cats, that I created immediately after my daughter was diagnosed with a CHD. The hospital I was at didn’t tell me about Caring Bridge or CarePages, so I winged it - I created a blog to keep family and friends informed. It was a great way to vent, to organize my thoughts and to share news without having to repeat myself. Since then, it’s grown into a sounding board and a way to stay in touch with friends and family outside my immediate area. I started and just can’t stop! It’s the cheapest form of therapy I’ve found to date.

The CHD Blog was born last year on a whim. I realized only a couple of weeks before February that there was a CHD awareness week. I wanted to do something. When my daughter was diagnosed, I felt alone in a vast sea… even the Internet couldn’t provide the answers I craved. The connections I wanted. Or a quick resource to get the information I needed. I thought that perhaps a portal could be created that was not affiliated with any organization, completely (or mostly) unbiased and for the general public’s consumption. That’s why the CHD Blog was born.

What have you learned from other Heart Moms and Dads?

I’ve learned how to advocate for my child. Coming into the world of acute care for the first time, I still held the ancient belief that the medical community knew much more than I did. While they do know more about specific diseases, organs, etc., they do not know my children. Only I can truly advocate for their needs.

I’ve also gained a support network I never knew I needed. I’m not much one for “support groups.” I don’t like group activities per se. Yet I have met incredible men and women both virtually and in person that have walked down similar paths. It’s hard to relate all of your feelings about “that” road we parents (or you patients) have been down. I didn’t even realize many of the emotions I harbored. Having friends that have walked similar paths in life really does make a difference.

What’s a routine day around your house like?

Honestly? Loosely organized chaos. I own a Montessori preschool, as well as an association management firm. I manage two full time clients (their accounting, marketing, public relations, event planning, administration, etc., etc.). I am married, have two daughters (six and two), two dogs, two guinea pigs and somewhere around 30 fish to care for. My day starts somewhere around 5:30 and ends somewhere around 1-ish. I spend some time in the preschool, a lot of time behind the computer or phone working with scientists and business professionals around the world, try to make sure to have some one-on-one time with my girls, and try to cram some volunteer work (usually CHD related) into the few remaining hours of my day.

Describe the moment that your doctor told you that your daughter had a heart defect?

It was a moment of pure, unadulterated shock. We knew something was wrong, but had thought it was minor at best. As the doctor drew a crude drawing of a heart on a napkin, his hand was shaking. He would not look me in the eye as he discussed her emergency intubation, that she needed to be medivaced out immediately, that surgery was her only option, and it was dire that intervention happened immediately. Until that moment, I had never even fathomed the possibility of a heart defect. I didn’t even know what CHD was.

In that moment, I asked stupid questions. One of the first, which I still cringe at, was if she would have open heart surgery, and if there would be a scar. Well, yes, dummy. What a stupidly naive question, so irrelevant to the life and death situation we were in. But I couldn’t connect the dots. I’d just had my daughter a few hours before, only 7 minutes after flying through the ER doors. And now they were telling me she was struggling for her life. I hadn’t had time to hold her. I hadn’t even really seen her. It was all just too much to take in.

After a long night of trying to wrap my mind around the situation and my reaction, I decided to change immediately how I was dealing with the trauma. I refused to let myself go down that “shocked” road again. My mode of operation since has been to push all emotions aside and to get analytical and realistic when faced with life-death situations. Of course, there are a lot of drawbacks to ignoring emotions and refusing to allow shock to take over - it only gives them opportunity to fester and grow, and it’s often ugly to deal with their neglected mutations after the emergency has passed. But it has helped me to become a better advocate in traumatic situations. Some people comment on this being a strength, but in fact it is not. It’s a total weakness - I admire other parents and patients that can cope with the emotional aspects of medical trauma while it is in progress.

What is your wish for your daughter?

That technology is always ahead of her in terms of treatment and her medical needs. That she lives a full and happy life. And that she never doubts for a second how much I love her. (Both of them!)

Thursday, January 29, 2009

Chin up!

I saw a great quote today, on a message board for some acquaintances whose little girl was just diagnosed with brain cancer last week.

LIFE ISN'T ABOUT WAITING FOR THE STORM TO PASS...
.....IT'S LEARNING HOW TO DANCE IN THE RAIN !

Sure, it's been used before, but for some reason, it really stuck today. And so, on that note, I'm resetting my mental framework officially, back to the present. I won't lie, I took a bit of a nose dive for a few weeks, but I'm over the hump and looking up.

And I'll begin by bragging about my kids a bit. You KNOW you want to hear it.

Katie's doing AWESOME with math. Amy, our teacher at Three Oaks, just moved her onto multiplication today. My Kindergartener is multiplying. How cool is that?! Further confirmation that my daughter is brilliant and that the Montessori method of teaching rocks. Katie LOVES her math work, and is so very proud of herself.

And Sadie is now talking in complete sentences. Just three short months ago I was worried about developmental delays with language, and now she is going off the charts verbally. She's very hard to understand, but works really hard to properly enunciate her words. Today she was sitting beside a little boy, rubbing his back as he worked (she's very touchy/feely). He looked up at me and said "She really loves me, you know." "Yes," she said, "I love him." And it begins...

Jason managed to get one more week squeezed out of his job, so that was a good thing. His last day is Friday, but he's confident he'll find something soon. He's got an interview next week (not for a specific job, with a recruiting agency), so hopefully that will open some doors.

And as for me, I relinquished quite a bit of the added stress I'd taken on with some volunteer efforts the last few months. I realized that the work I was doing was important, but not so much so that my mental and physical health should be put at stake (this realization came to me in the middle of the night as I lay shivering in bed with the flu over the weekend, while entering data for that volunteer work). I was pushed to my limits with a few negative people, and decided to exit stage left. And I feel good about it. I'm going to ensure the transition is a smooth one, and that my efforts don't go to waste, then I'm drawing the curtain on that portion of life for a while. I need to stop and breathe, spend time with the girls and reconnect with my friends.

Wednesday, January 21, 2009

Running for 'Manda

It's that time of year again - Ukrop's 10K time! This year I will be running in honor of my long-time friend, Amanda, who continues to fight leukemia. Last year I ran for the first time, in her place. It was the day that she began to discover what her diagnosis was, after a series of strange illnesses. This year I want to get a better time by at least five minutes, and to make her proud.

Anyway, I'm in the process of forming a team - temporarily called Team Amanda. Let me know if you're interested! We won't necessarily run the race together, but we'll meet up afterwards, party and add back some of the calories lost, and toast to the Great Amanda. I'm hoping Amanda will be able to join in the affair, but we'll have to see what is going on with her health and scheduling.

As our mascot and motivation, I'm also hoping to find a time for a little kick-off shindig (if we can fit it into her crazy treatment/health/upcoming travel schedule). Let's get out there and show her we love her, pound some pavement and make her proud!!

Monday, January 19, 2009

One step forward, two steps back...

Life was beginning to turn a bit closer to our average shade of normal last week. Jason's feeling better and pretty much back together from all his medical drama. Sadie's mellowing a bit after weeks of tantrums. Katie was happy to have rediscovered the joy of the school routine. And I got back up off the couch after two days of sick/exhaustion and got back into life.

Then the newest fun hit. Jason has become another victim of the economic downturn. As of Friday, he will be unemployed. If you know of anyone looking for a brand manager, let him know.

And so, the fun continues. I'm stressing in a weird, detached way. I know life will continue, and that we'll either make it or we won't financially, and that there's nothing we can do except search for opportunities. I've been struggling with a decision as to whether or not to continue in association management (the pay is abysmal in a small firm like mine), so I, too, will be on the market. Of course I have the school to contend with too. But I don't get paid to work there (breaking even is finally happening), so I can't hold my hopes on that to grow fast enough to support our family. I'm on the lookout for graphic design and writing freelance stuff to help fill in the gaps. You know, when I'm not working on my two companies or two clients...

OK, it's not all dreary here. Katie and Sadie are both in super fun stages right now. Katie has really taken off with her reading, which is a lot of fun (though it sucks that I can't get away with spelling things out in front of her anymore - time to break that habit). Sadie suddenly became a talking machine and talks, nonstop, day and night. I love her singing - she's quite the diva. My favorite goes something like this... "Fossy Snowman! Joll-ee Sowelll!"

Anyway, onward and upward. I'm hoping this "setback" is actually a sign of something bigger on the horizon!

Monday, January 05, 2009

Not so tough, are ya?!

During the past two weeks, a lot of people have told me I am strong. I want to set the record straight. I am NOT strong. My nerves are raw and my emotions are on edge. I've cried the past two days over multiple things, big and small. I'm exhausted and, dare I admit, feeling a tad blue. I know, I shouldn't be. I have a lot to be thankful for. But there it is, I said it - I'm weak.

I know that the "you're so strong!" comments are meant in sincerity, and as a compliment. I do appreciate the votes of confidence. But the "me" that comes out on this keyboard or chit chats on the phone is far from the deeper "me" that is curled up in the recesses of my brain in a fetal position, rocking away, rocking away...

For some reason our family got hit by two major medical traumas in two short years. And I had a front row seat both times. When you're thrown into something like that, you don't HAVE a choice but to hold it together and "stay strong." But I'll tell you, the minute it's all over with, I, for one, go to pieces.

So, I disappeared the last few days from humanity. I spiked a nice fever at 102 the day after Jason was released from the hospital, and two days later, when it went away, I was left feeling more exhausted than I ever remember feeling before. The adrenaline that kept me going during crisis mode has long since gone, leaving behind a worn-out, stressed-out mess in its wake. I was home with the kids and Jason for what felt like an eon, leaving only for doctors appointments and must-have Target trips. I answered the door in pajamas. I didn't bathe for two days at a time. Thank goodness for our friends in the local Mended Little Hearts, who were so kind to bring food by for our family this past week. I had no presence of mind to cook, clean or do anything beyond caring for the kids and Jason (when allowed - he's rather irritable on all those steroids). I pretty much fell to pieces.

Tomorrow things start up again. The girls are back to school, our preschool is again open, and my consulting business is back in full-swing, gearing up for tax season. Jason goes back to work, as well, though he's still not quite back to his normal self (he's dying to go back to work - that right there is an indicator that something still isn't quite right).

I'm ready to move on, too. To pick up the pieces and get life back in order. Tomorrow is a new day, in a new year that I KNOW holds great things! I just need to pull it together, get up off the couch and get back in the game.

Tuesday, December 30, 2008

Almost Famous

Last night in the ER I got the first taste of the rarity of a medical emergency like Jason's. The nurses recognized me, those that didn't whispered as I walked past. Sadie's illness was taken very seriously, and all the stops were pulled to make sure she was OK. And I was frequently asked how he was doing now that he was off the ventilator, and if he was more lucid. Today I had complete strangers ask how he was - our local Target pharmacist, a CVS pharmacist last night, and then my primary care physician, whom I had not discussed the case with. It turns out there is a reason why.

The fun continued last night after listening to my home answering machine. The dermatologist Jason saw a couple of weeks ago called to leave the lab tests results. Turns out that there are a "hint of auto antibodies" in one of the cultures. We have yet to work on what that means, but my Google searches yielded insights as to why we were having protein (and thus swelling) issues in the CCU during his intubation. It also may explain why the virus he had ravaged him so much - his immune system is likely out of whack. Now to figure out why.

This morning Jason was released from the hospital, but before I picked him up I told him of the results, and we used speaker phone to notify the attending nurse, who passed the word onto the doctor.

In the mean time, apparently the culture came back positive from the first night - and it shows H Flu. It's pretty rare to contract due to Hib vaccinations. So we're piecing together how he could have gotten it.

In a new Michael Crichton turn (no more ER, think more like "Congo"), I was standing in line at Target after dropping off some prescriptions when my phone rang. I didn't recognize the number, but decided to answer, thinking it may be Jason's work or the hospital. It was the Department of Health.

The gentleman on the other line of the phone was calm and collected as he asked about our family, living conditions, the children's health, my health. He mentioned a possible quarantine and prophylactics, but wanted to gather more information first. As we talked, I found out he'd already received lab reports from the hospital (which had alerted him to the situation), had spoken to our and the children's primary care physicians and knew most of our medical history. He'd talked to our pharmacist and gotten those records. And he knew about Jason's dermatology referral. He was just quizzing me, I guess... he already knew the answers. Creepy. Talk about Big Brother.

State Health guy said he'd call back in a few minutes with directives. When he called back, he wasn't quite so foreboding, but asked how I'd been feeling. He had found out from ER records (which he'd requested and I'd just released) that I had Jason's sputum (which included a lot of blood) all over my face and clothes that day. Not shockingly, it's not a good thing, so they wanted me to get on antibiotics immediately. When I told him that my throat had been hurting with what I thought was sympathy pains or dry air, he told me to immediately go to my primary care provided for a culture and the goods (antibiotics). At my doctor's office I had cultures taken, confirmed a fever of over 101 and he confirmed my throat was cherry red with white patches. I can't tell you how happy this makes me after what we've all been through the past five days.

As far as the girls, it turns out I hadn't been overreacting when I took Sadie to the ER last night. She's on the correct antibiotics, which they gave because they knew it was either a stress or h-flu type of infection (thanks to her daddy's medical records). Katie is headed for the doctor tomorrow, and I'm a bit worried by what I originally thought was a bug bite that now looks much worse on the side of her face. She had strep a little over two weeks ago, and a 10-day course of antibiotics, but they weren't the ones that fight these particularly nasty strains of strep and flu. I'm not OVERLY worried, though, because both girls were away from him during his coughing spasms and stridor, so it's unlikely they were infected. Our extended family has been informed to be vigilant, but it is very unlikely they'd be sick, even those present on the day he was so sick in our home. I had cordoned off the area he was sick in and had sterilized everything the following day, so we're OK on that front. Friends and family who visited in the hospital are fine - they had a HEPA filter going the entire time, and he was no longer infectious by the time he woke up.

So, tonight I'm feeling more like a Michael Chrichton book than the ER mini-series he produces. I'm exhausted and have a fever of about 102. I've been sick the entire time, but just kept going knowing I didn't have another option. I also kind of thought, to be honest, that I was being a bit of a hypochondriac given the terrible things I witnessed with Jason on Christmas day. Several nights I woke up having difficulty swallowing, which I'd attributed to stress.

I'm hoping that by tomorrow Sadie is much better, and I'm on the mend, and that by the first day of 2009 we're over this hump. I know Jason has a bit of a road ahead in determining the true nature of the medical problems that led to his hospitalization, but just to have each one of our health OK for a day would be great.

As an aside, I know I haven't really been writing like my normal self. This whole thing has been a weird, life-changing kind of event, and not just for me. Jason is trying to process what he saw, how he feels, and where he "went" during all of this. It's hard to lose 3 days of your life. I'll leave the details of the events and his emotions for him to tell - if he wants to, to whom he wishes to share it.

I, on the other hand, wonder who this person is coming home. Will he be the same? Will his life change forever? And how do I process all of this, myself? He said and saw some crazy things in there. And he's got a very different outlook on life at the moment. I just wonder if that will last, or change. I don't know how else to describe what I'm feeling now, and it's definitely too deep to bring to the surface yet, let alone write about. I may never talk about it, actually. I just don't know.

Monday, December 29, 2008

On this episode of ER...

Jason is doing well, having "stepped down" from Critical Care to the Cardiac/Pulmonary Unit. His vitals are good, and he's feeling better with each passing minute, making incredible progress at a fast pace. The nurses are amazed.

Meanwhile, down in the ER, most of the show's "regulars" are back in play, with an unusually high volume of patients with a vast variety of maladies. Special Guest Kim Thies (who appeared on last week's episode) makes another appearance, this time with her youngest daughter, Sadie, who presents with many of the symptoms of a rare and deadly disease - the one which everyone is still discussing from the previous week. The nurses drop in to visit with Kim, her sister and the young child, talking about the miraculous intervention the previous week while the child waits to be evaluated.

The young child is sent home after about 4 hours on antibiotics after a series of soft-tissue x-rays and minor probing. A strep A test has yielded negative results, but the child clearly has a strep-like bacteria or virus harboring in the back of her throat... strangely similar to her father's.

On the way out of the hospital, Kim goes by the patient Jason's hotel room with her young daughter in tow, and a tearful reunion ensues.

As the episode concludes, the Kim returns home exhausted and calls Jason in the hospital, dancing around the issues and things that have yet to be discussed. They talk only momentarily about the need to search more deeply for answers to unwrap the medical history. And they make plans for his return home the next day.

In the fade out, Kim is seen typing away in a quiet house, sipping hot tea to soothe her raw, sore throat.

End scene. (and our day)

Coming to...

Today isn't nearly as entertaining as yesterday, but it's not as intense, either. I'm actually taking an afternoon break at home to catch up on some work stuff, file insurance and all the other goodness that comes with an extended hospital stay.

The doctors think Jason can come home very soon, possibly even tomorrow - all his vitals are fine. He's functioning very well, and no longer hallucinating. His motor skills are not there yet, and he's functioning like he's a very smart drunk. For those of you that have seen him drunk, you know he's not a smart one, so that part is kind of weird. :) He's not really up and walking much, but we'll probably try that again this afternoon. Basically, today he's back to himself, annoying me to death about how much longer it will be before he can leave. Every 5 minutes... it's worse than a road trip to DisneyWorld with a 4 year old.

The girls will probably both be back with me tomorrow too. So for the moment I'm enjoying my few moments away from the beeps and sanitizer smells (even if I'm working). Now that the crisis is over, I'm ready to crash for about a week.

Over the Hump

Jason was extubated this morning, and has been doing really well. I've laughed a lot today at his weird comments, imaginary friends and musical references. The day nurse was really concerned about his lack of lucidity, but for once, I haven't been. I just feel that since they were giving him an overload of meds to keep him down that it's being stored longer than normal in his body fat. As the day went on, he got more and more coherent and lucid. He's still forgetting comments made just moments before, but he's also undergone a major trauma and has no recollection after Christmas eve (which is expected and part of the nature of the drugs he was given, and something I'm thankful for right now).

Some of our fun today included wanting to go on a search for a missing Snuffalopogus (who apparently had been in the room with us most of the day). When Jason was asked shortly after being brought out of his sleeping state who I was, he said excitedly "she's THAT lady." He later referred to me as the "one who fell down the mountain on skis that he laughed at and followed" (long story - but it is one that's about a decade old now). He spent quite a bit of time chatting up the IV machine. And at one point he was gazing at/around me, just beaming. I asked him what was going on. He exclaimed it was just so beautiful. I said something like I hadn't even put on makeup or done my hair. He said, "No, not you. That beautiful crystal blue waterfall behind you with the dancing bears." Ummm, yeah. I couldn't make this stuff up if I had to.

In addition to the fun outbursts ("scratching nuts!," "lalalalala" and "grape wash"), lapses into various Duran Duran references (he frequently told me he was "Hungry Like a Wolf" before lapsing into uncontrolled giggles) and singing "Sister Christian," he was also "picking" quite a bit and trying to pull out his oxygen, iv's and such. I was hands-on, all day long, except for a brief respite when some friends came to visit (thanks Cristen, Pam, Steve, Tanya and Seamus - it sooo helped my sanity). I'm exhausted, but in a better way than before. Where I had woken up this morning feeling downhearted and thinking it was going to be possibly another week of CCU (based on what they told me lat night), I'll be getting up tomorrow to the hope that it will be only days before he's out of there. BIG difference from the 3-4 weeks they were projecting previously.

Thanks for all the thoughts, prayers, comments and support. We have the best network of friends and loved ones anyone could ask for.

Saturday, December 27, 2008

I hate ICUs

I hate the smell, the beeps, the droning fans and the life support machines lying around. I hate when the staff start saying "every case is different" followed by "I haven't seen this before." But even more so, I hate when they avoid responses to your questions, or worse, don't tell you of changes. I can see changes. I'm not blind.

Edema is setting in fast - I went home for 2 hrs, and came back to +3 swelling in his extremities. He's had to be suctioned more frequently, and it's thick and bloody. They avoided explanation, until I asked them if what I was seeing was acurate. They agreed (who knows what they are holding back that I don't see). Yeah, I'm officially worried now.

Monday is now the very earliest they will extubate.

Day 3 begins...

I came in to the CCU early (before visiting hours) to try to catch Jason's specialists on their rounds. Luckily I caught both the ENT and the pulmonologist. They had tried to reduce the vent this morning, but there was no air leak, meaning there as no reduction in swelling overnight. They'll try again tomorrow.

His white counts have lowered to 14, so the antibiotics are kicking in. He's on 60 cc of propofol to keep him under (normal is 50 max), but he still woke up when I came in this morning. He wanted to know what was going on and how much longer. Wish I could give him an answer. They gave him adavan and morphine to knock him back out.

I cornered the specialists and drilled them with all my concerns and questions. Jason has been sick with one malady or another since May, including several URIs (including pneumonia)and has frequently complained he could not get full breaths and his chest didn't feel right. The specialists say we have to just focus on getting the swelling down enough to get him extubated before we can I think about what is causing all these things. I'm just glad his white counts are dropping, meaning the antibiotics are kicking in. His chest xray is clear, so that's good too.

So, it's another day of waiting, watching and hoping for a reduction in swelling. I'll post if anything comes up.

Friday, December 26, 2008

Hanging out in the CCU

Jason's still in the CCU, on a ventilator, with steady vitals. The swelling has not begun to go down, which I find worrysome, but we won't know more until we see the ENT specialist again tomorrow. I was there most the day, and he was awake and lucid several times, to our nurses dismay. They let him try to communicate with me while they put in more meds to sedate him (for some reason he doesn't go down as easily as he should). Using gestures and lots of eyebrow action he asked about how the girls were, where he was, what had happened, how long he had been there and how long he would be there. I lied and told him 2-3 days.

It looks like 3-4 weeks, though we hope he is extubated in 48-72 hours (they're adding a day or two, due to the lack of reduction in swelling). He'll remain in an induced coma until they extubate for his own safety.

He looked worse this morning in terms of swelling than last night. They say the reduction of swelling will likely occur from the inside out, so it may look worse than it really is. His white cell count is hovering at 18-19. He's beginning to breathe over the vent even when he's out cold, which is good in his case. And his heart rate is back down in the 80s (yesterday it was in the 140s). So, I think he's over the hump and we're now into the waiting game.

Thank you for all the prayers, well wishes, support, calls and hugs. The kids are doing fine - Katie went to be with her cousin Brittany, and is happy as a clam to have a few days with her. Sadie is sick with a cold, but the fever seems to be over. Mom and Dad are staying with her so I can be at the hospital with Jason. His family has been visiting. For now we have to keep visitors there to a minimum, but once he's off the ventilator we'll be able to have people over to visit. If I don't reply to comments/posts/emails/calls, please know I love you and I appreciate it despite my lack of correspondence. Thanks!

Stable

Jason's stable this morning, though he woke last night and sat straight up in bed (not good when you're on a vent!). They've got him knocked back out and resting. His blood pressure and oxygen saturation levels look good, and his pulse is staying steady. The fever is still going, as expected. Visitation doesn't start until 10 am, so I haven't been in to see him yet, but they say the swelling in his neck is about the same.

Thanks for checking in!

Jason's Ok

Thanks to all the friends and family for thoughts and prayers. For those not in the loop, Jason had breathing issues today and landed in the ER this morning. He was later released, only to return a few hours later in worse condition. The diagnosis is epiglottitus, and he was miserable. There were a few scary minutes when they couldn't get him intubated and we were losing him, but luckily they succeeded without having to do an emergency tracheotomy (which was mere inches from taking place). I can't even describe the feelings/emotions/tiredness of the day.

He's in a medically induced coma for the next 48 hours, and the swelling in his throat should receed during that time. They hope to extubate him then, and then he'll be in the hospital at least a week or two recovering. I'll update here when I can.

I got home and did some reading, and just found out it's contagious, so please pray/chant/whatever you do to the higher powers that be that the kids, extended family and I don't come down with it. Especially the kids. This stuff is nasty.

Sunday, December 14, 2008

Love, Love, Love

Sadie has become the meanest little bugger to her sister. She kicks her, pulls her hair and pesters her endlessly. Katie will be sitting, playing quietly, and Sadie will come up and yank her hair, just to see the reaction. We've tried everything to stop it, but it just wouldn't end today. Katie was crying every 10 minutes for another hit, pinch or hair pull. It doesn't help that both girls are still feeling ill and housebound.

At one point Sadie yanked a chunk of hair out, sending Katie into a (very loud) spasm of cries. Jason had enough and went in and pulled Sadie's hair so she'd know how it felt. Sadie erupted in cries - both girls at the top of their lungs. Five minutes later it calmed down, only for Sadie to do it again. I decided to try another tactic.

I told Katie to fight back. If Sadie pulled her hair again (the pain infliction of that moment), she was to pull back - HARD. If she hit, hit back. Bit, bite back. I told her it wasn't the nicest thing to do, but that we needed to teach Sadie that a) it hurts and b) there are consequences (since making her sister cry seems to be more of a benefit then a consequence to Sadie).

Sure enough, a few minutes later they're playing quietly in their room. I hear Katie yowl in pain again and rush to the stairs to listen to what's happening. Katie pulls back, HARD. Sadie cried. I waited. Katie came to the top of the stairs.

"Mommy, I never want to do that again. I don't like to hurt Sadie." Awwwww.

I wish I say my tactic stopped it. It didn't. Sadie started scratching again. Now Katie's got hang ups because she didn't want to hurt her sister and feels bad about it. And the yowling continues...

Tuesday, December 09, 2008

I'm still here!

Just not able to keep up with the blog lately. The last few weeks have been insane - 70 hour work weeks, late nights, sick kids, sick me, etc., etc. Just yesterday we got the tree up, today the lights outside. I haven't even thought about Christmas lists...

But the girls are merry and bright, ready for Santa. Thank God for advent calendars, which helps dilute the number of "how many more days" I get every hour. They keep me chipper despite the blundering economy (that is definitely having an impact on my clients, thus on me). We've been singing carols galore. Sadie's favorite is Jingle Bells, Katie is a classic Here Comes Santa Clause kind of girl. I'm still rooting around for those Christmas CDs I squirrel away every year... I know they're here somewhere!

I'm still looking for a couple of kids to round out our school enrollment. Know of any? Send them my way! We've been working on the different winter holidays, and I have to admit, I've learned a lot about Hanukkah, Kwanzaa and the Advent that I didn't previously know. And I've learned a lot about guinea pig diets. Yes, we have two additions to our classrooms. I now understand why they are called pigs. Sadie loves to hold the fattest one, Peanut, and make him squeal like mad. Vixie is my favorite - she actually cuddles. At least as much as a smelly rodent with a minimal IQ is able to snuggle. Ah, the joys of preschool!

I'll resurface soon with something of interest - for now, enjoy the holiday preparations!

Saturday, November 29, 2008

I'm thankful for Vivien Thomas

As I mumbled about this weekend, feeling a bit forlorn, a friend blogged a story about a man I knew nothing of, but whom I owe my child's life to. The story was so inspiring, I just have to share it here. Vivien Thomas is my newest hero.

Excerpted from Adventures of a Funky Heart...

Vivien Theodore Thomas was born on August 29, 1910 in Lake Providence, Louisiana. After graduating high school in 1929, he planned to attend Tennessee Agricultural and Industrial State Normal School, (Tennessee State University) with hopes of becoming a doctor.

He had been in school two months when the stock market crashed, causing him to lose his part-time carpentry job. Forced to drop out of college, Thomas still found work as a Lab Assistant at Vanderbilt University Medical School, working for surgeon Dr. Alfred Blalock. Although hired to sweep floors and clean out cages, Vivien Thomas impressed Dr. Blalock with his intelligence. Blalock was so impressed that he trained Thomas to be his Surgical Technician.

Thomas began assisting Blalock in the study of shock during surgery. Shock is caused by a sudden drop in blood flow through the body, and can be fatal. Working together, Blalock and Thomas developed ways to prevent shock from occurring during an operation. By World War II most of their theories were in use, saving the lives of countless injured soldiers.

In 1941, Dr. Blalock was hired by Johns Hopkins Hospital in Baltimore, Maryland, to serve as the hospital’s Chief Surgeon and as a Surgical Professor in the Hopkins Medical School. The doctor asked his trusted assistant to go with him, and Thomas agreed. But while Blalock was responsible for training every surgeon in the school, Thomas had to enter the building through the service entrance. He was also listed on the hospital payroll as a handyman.

The two men respected and trusted each other, but were hardly equal. At one time, Blalock was paid ten times more than Thomas. Often the doctor hired Thomas to serve drinks in his home during a social event. And never was Thomas allowed in the Operating Room.

It was at Johns Hopkins that the two men met Dr. Helen Taussig. Taussig had been hired in 1930 to oversee the Cardiac Clinic of the Harriet Lane Home, (Hopkins’ children’s hospital) and quickly grew interested in “Blue-Baby” diseases.

Usually, blood coming into the heart is routed first to the lungs, where it absorbs oxygen. The oxygen rich blood then goes back to the heart, where it is pumped throughout the body. Blue Babies are born with a badly formed heart or blood vessels that cannot provide enough oxygen to the blood. Their skin has a distinctive blueish tinge, especially in the fingertips. At that time Blue Baby diseases were incurable, and almost all of the patients died very young.

Dr. Taussig approached Dr. Blalock with an idea: if a Blue Baby’s heart couldn’t provide oxygen to the blood naturally , then why couldn’t a surgeon re-route the major blood vessels? Taussig’s plan was interesting but extremely dangerous. The operation would have to take place near the heart, and heart surgery was so risky it was almost never recommended. Any accidental damage to the heart would have to be repaired within 4 minutes, or the patient died.

Busy with his teaching duties, Blalock asked Vivien Thomas to work out the details of how such an operation could be done. Thomas began by studying medical textbooks, drawings and diagrams of hearts, and even real hearts taken from dead bodies. Then he operated on dogs, intentionally creating Blue Baby hearts in them. Later he would operate again, repairing the heart and making careful notes of everything he did. It was a slow process, learning exactly what had to be done. Many dogs died, and several of the surgical tools he needed didn’t even exist. Quite often, Thomas would invent them.

X-rays of the patient were another problem. X-ray films provide a good still photograph of the workings of the body. But Taussig preferred to use a fluoroscope. A fluoroscope image is best described as “X-ray TV”– It provided moving images of the interior of the body. If the patient accidentally moved, so did the picture. There was no way to record the fluoroscope image, so the three doctors would have to study their patient’s fluoroscope scans carefully and commit them to memory.

At last they felt they were ready, and Taussig began to search for a proper patient. On November 29, 1944, they operated on a little girl named Eileen. Although fifteen months old, Eileen only weighed nine pounds.

Thomas had planned to be in the observation room, watching the operation. Blalock said no – he felt more comfortable with Thomas close enough to give him advice. In preparation for the operation, Thomas had performed the procedure over 100 times on animals. Blalock had been taught the procedure by Thomas, but had actually done it only once. Breaking all the rules of the time, Thomas entered the operating room and guided Blalock through the operation.

Eileen’s heart never stopped beating and her blood vessels were only as thick as a matchstick. After about 90 minutes, Blalock was finished. Everyone held their breath as he removed the last clamp from a blood vessel. After a long pause, Helen Taussig said “Al, the baby’s lips are a glorious pink color.”

Proven to be a success, Blalock’s team performed nearly 300 operations in less than a year. Surgeons came from around the world to study Blalock’s new surgical procedures, only to learn that Thomas was the expert, not Blalock or Taussig. Still, the operation was known as the “Blalock-Taussig Shunt,” named for the surgeon who performed it and the doctor who suggested it.

Blalock retired in 1964 and died four months later. For six years, Thomas continued to teach but took on no major project – almost as if he were in mourning. But as the 1970’s began, more and more African-Americans were entering the Hopkins Medical School. To them, Vivien Thomas was not just one of their teachers, he became their mentor. And just as he had guided Blalock so many years before, Thomas’ advice and support guided a new generation of doctors through medical school.

Thomas died in 1985, just a few days before his autobiography was published.* Today, Vivien Thomas is almost unknown to the general public. But Dr. Alfred Blalock never forgot him. If someone stood too close to his right shoulder during an operation, Blalock would tell them to back away. “Only Vivien may stand there.”

* Thomas’ autobiography has been reissued with a new title: Partners of the Heart: Vivien Thomas and his work with Alfred Blalock.

And now, my friends, it's time to track down that autobiography. Thanks for sharing the story Steve!

Sunday, November 23, 2008

Holiday Horrors

How was my weekend? Well...

Sunday, November 16, 2008

Trying to Keep My Head Above Water

It's been a busy week or two since I've last had time to post. Preschool has officially started, and we have our first students. We took one student on that we were unable to keep, which is upsetting for me. But, I learned an important lesson on how Montessori is not for everyone. It was a long day on Friday, as we worked to figure out the best solution, which in the end resulted in our not taking on the little one. I've been upset about it all weekend, even though I know we did the right thing.

The girls are doing great! Katie got her first report card, with all perfect scores on her progress. She's gotten comfortable in her classroom, as her teacher informs me she's become quite the chatterbox. I'm glad she doesn't save it all for at home. It's amazing how much - and how long - a six year old can talk. I try to pay attention, but often feel my eyes glazing over about 5 minutes into her rendition of her entire day. Wow. She doesn't leave out a detail. I think that, instead of Guatanimo, they should tape shut the prisoner's mouth and stick them in a room with a rotation of six year old girls, each fresh from a day at school. Talk about torture. But I love that she's so open with me, so I shouldn't complain. Much.

Sadie has taken to preschool better than I thought she would. She has a tough time sharing mommy when I'm in the classroom, and has been remanded a few times for wanting to push others away when they come to close to me. She's enjoying her introductory lessons, though, and I'm amazed that a little spitfire like her will take her time to so delicately unroll her mat, place her materials on it just so, work quietly, and then put her mat away. Amazing stuff, this Montessori method. She is fiercely independent as always... we're past the biting phase, and now into a hitting one. Good times keep on rolling!

Preschool is hilarious, and has left me considering wanting to do another blog, anonymously. Seriously, the things these kids say and do are incredible - from potty jokes to play-do up the nose, it's been a nonstop barrel of laughs.

I'm still managing my two full-time clients and doing the work for my other business as well, so I barely have a moment to blink, let alone write these days. I'm zapped of energy, yet feeling enthusiastically hopeful about this school thing. I do enjoy it more than I imagined I would, and can't wait to see how we grow.

Tuesday, November 04, 2008

Election 2.0

So, Obama won. It's no surprise, really. It was fun to be a part of history today. I actually got goosebumps as I stood in line with a hundred plus people at our little voting station, realizing that many, for the first time in their lives, were making an investment in our country. The woman behind me was 62 and voting for the first time. Wow.

Now to see how we reflect on this historic day four years from now...

The thing that I think isn't being talked about enough is the evolution of communication that led to this historic night. And how it will change elections next time around. Obama exploited Web 2.0, and I truly believe that this, plus grass roots efforts, was his potion for success. The Republican party can be blamed for choosing a poor VP candidate, neglecting to find a campaign winning message and many other things. But I think that truly, they lost because they did not embrace the evolution of communication, but kicked against it. They wanted to mandate what the public saw, and how they interpreted it. They failed to understand that, in today's society, the public defines the politician (or the company), destroying the long-held belief that the politician (or company) can dictate what it is and who it stands for. Evolution at its finest.

What scares me is the thought of our election four years from now. Because next time, both candidates will have caught onto technology and embraced it. Next time they'll be able to reach further into our homes and lives... scary, isn't it?!

UPDATE: Check this article out - great ideas on how Web 2.0 can infiltrate and change our political system.

Monday, November 03, 2008

GOOD Morning!

I awoke at 5:00 this morning to the girls fighting. I rolled out of bed, covered in sweat (I'm still recovering from bronchitis, which hit late last week). Came downstairs to discover Darla had eaten off half of the fur on her tail, leaving a nasty patch of red skin showing. The girls had destroyed what little I'd kept up over the weekend. And Sadie was hot. Great. She'd been sick early last week, got better within 24 hours, but then had been fighting something since Friday, so I sat her down, got her some food and drink and turned on the TV. Then I noticed Katie was hot too. Looks like there will be no school today.

I got both situated in front of the television and sat down to survey the damage. I discovered Carly had broken one of her nails, in HALF. It was dangling and bloody. Oh joy.

Katie got on my computer to check in on Webkinz, but quickly closed it and looked at me. Uh oh. Pale face, dark sunken eyes. Checked her fever 102. Checked Sadie's - 101. And mine? A mere 99.8 today.

So, I'm trying to decide now who should go to the doctor and who shouldn't. So far, since 5:00 a.m. I've changed two beds, bathed one child and one dog, tried to perform minor surgery on the other dog (unsuccessful), and started the sterilization process, which includes thus far two loads of laundry, a load of dishes, Lysol mass attack and vacuuming. Any one care to join in on my fun?

The only person I know who's having less fun than me today is Amanda, who's headed back to the clinker for more chemo. Please send positive mojo/energy/prayers her way - that they find the right cocktail to get her into remission this time around, minus the massive mouth sores. Hang in there, 'Manda!

Saturday, November 01, 2008

Slacker McSlackity

I won't lie... I haven't felt like writing. So I haven't been. Life's taken some unexpected turns that have left me reeling a bit, but I'll be back in the game soon. In the mean time, I'll post some photos.

Sweatsuits - $15.
Reindeer headbands to be cut up and reused as cat and mouse ears - $ 2.
Staying up until 3 am making homemade Tom and Jerry costumes the night before the Halloween party - 5 hours of lost sleep.
Photos of your kids willingly wearing the most ridiculous costumes ever - Priceless.



Straw maze! A local farmer's market puts it up every year, and we have to go through it several times before the season is over.


There's no more chances of getting Sadie in an unposed shot. Every time I pull out the camera, she stops what she's doing (in this case, smashing pumpkin guts with the stem) to shout "Cheeez!"


Katie carved her pumpkin completely on her own! She held her mouth that way as she did it the entire time, too.



Crazy Hair Day at school on Halloween.
She loved it. Really she did.
Meanwhile, I hummed "Jem, she's truly outrageous..." all day long.

Sadie's ears weighed more than she did, and they kept flopping over with every breeze of wind. And we all couldn't stop laughing. Guess we'll go back to buying costumes next year - although the homemade ones will be good blackmail pictures later in life...

Hope you had a Happy Halloween, too!

Don't forget to VOTE on Tuesday!!!

Saturday, October 18, 2008

Seeing Stars

For the girls birthdays this year I made each a cake for their at-home soiree. Sadie got Pooh, and Katie chose Tinkerbell. Both involved thousands of little icing stars, which are fun at first, but torturous after about 1:00 a.m.

Katie's cake, though, was more fun to make than I'd anticipated. It was so much fun, in fact, that it has encouraged me to simply buy a cake at Ukrops next year. Here's how it went:

1. Cake came out of the oven PERFECTLY. Sat it on the counter to cool, went to take care of something, and Sadie got by me and into the kitchen. Five minutes of an unattended toddler led to this...


2. Made another cake. It fell. Face came off when coming out of pan. It was about midnight by then. It came out looking like this. In case you're unsure, yes. It is about 1/2" deep (compared to the previous cake's light and fluffy 4 or so inches).


3. Improvisation. Cake 1 plus Cake 2 equals something similar to what it should look like.


4. Final product. See? You can't even tell. Unless you ate it. Half of it tasted like lead poo, the other was light and fluffy.

Sarah Palin Fun

I can't help it... this is too funny not to pass on. Click on anything in the picture and she'll tell you what it is. http://www.palinaspresident.us/

Wednesday, October 15, 2008

Random Stuff falling from my Brain onto the Computer Screen

Warning - there is no cohesion to this entry whatsoever. This is what happens when one is overworked, sleep deprived and exhausted to top it off.

So, what did you think of the final presidential debate? All in all I thought McCain looked like the guy I actually would have voted for last election cycle. I was happy to see him back at his best. And tonight reconfirmed how much fun it is to be an independent. Although I had pretty much made up my mind months ago, I am able to see pros and cons of each candidate. At the end of the debate, I've finally made up my mind for sure ,though I'd been leaning that way quite a while. I'm going with the guy that I can see making educated, sound decisions that consider the population at large, that I believe will be the best leader both abroad and at home. Guess who that is? There, I did it. I spilled my political beans. I'm voting Obama.
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The school is finally open. Ms. Amy, our school teacher, is awesome - Sadie has thoroughly enjoyed her first two days of "skooooohl." She's learning (though she doesn't know it) about spacial relationships, simple math skills and language. Plus she's doing fun crafts and such. She's taking some nice naps, eating like a little piggy and generally a happy camper. She just needed a constant availability of new things to see and do, apparently, to forgo the tantrums. She does miss her Grandma, though!

So yeah, the school is done. A few pickity pics are included for your viewing pleasure. Pretty, no?! Sadie's favorite area thus far seems to be practical life and botany/animal science/geography. Katie's loving math and language, and has been having fun doing phonetic excercises with the movable alphabet. I need to get out and get more photos of the sensorial area and practical life - tres cool!


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Though I seem to be the only human truly affected, my fluffy feline best friend has gone missing. It's been over a week and two trips to the pound, but still no Buster. The people at the pound told me yesterday that there's been a rash of rabid racoons in our area, which has me fearing the worst. Especially since the day before he disappeared I noted racoon prints on my car hood. I miss his furry highness knocking me over in the mornings as he begged for breakfast, purring his loud, uneven purr and licking my toes with his sandpaper tounge. Well, I don't miss the toe licking, but I'd take it every day for hours on end if he'd just come home. There I go getting all teary about it again. I miss my kitty!!! He is (I refuse to think he's otherwise) the best cat ever. Ask anyone who's met him.

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Check out Sadie's latest trick:



Endless dinner time fun. That's "burp" in case you didn't figure it out. A mother couldn't be more proud.

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And, to conclude this random mess of a blog entry, some long overdue pics of pretties!

Monday, October 06, 2008

Who's disorganized?!

My newest employee suggested to me today that I contract out to someone to "organize" my life. Umm, yeah. It's gotten that bad.

I haven't kept up with blogging here because I haven't kept up at home. I haven't kept up at home because I can't surface from the consulting business. I can't surface from the consulting business because I'm so far behind on the new school stuff. And I can't catch up on that because I don't have 48 hour work days.

The remedy? I took off for the weekend on a trip to Blacksburg. I turned off the email on my iPhone, left the laptop at home and imbibed in nothing but fun from Friday night through Sunday afternoon. Man, I needed that. I came home feeling like a new woman - prepared to take on the world.

Then I realized that piles of laundry awaited. Katie's homework wasn't finished as of 7 am this morning (what is WITH the Kindergarten homework, anyway?!). The house looks like the Tasmanian Devil resides here. I'm further behind on work now. I'm even more desperately behind on the school. And one of my client's is on a war path heading straight toward me. I'm sure of it.

Maybe I should get the "professional organizer's" number. Or maybe I could just throw the towel in and head back to Blacksburg. Avoidance sounds wonderful at the moment.

(Side note - For my friends who read and keep up with the CHD world, there are a few really interesting entries on the CHD Blog of late regarding long-term care of CHD patients.)