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!)

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.

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!!

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!

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.

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.

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.

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.

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.

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...

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!

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!

Holiday Horrors

How was my weekend? Well...

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.