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!

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?

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!

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.

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!

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.

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...

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!

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!)