Monday, February 15, 2010

Hey, look! It's me again. I'm almost being consistent.

So the previous entry was about our Denver trip right before Christmas. Then we had to go back a few weeks later, this time to Denver Children's Hospital, to meet with Dr. Sagel. Dr. Sagel is really freaking brilliant (as are all of Sophie's doctors). His specialties are cystic fibrosis and primary ciliary dyskinesia.

Those playing along who remember details well may note that Sophie has, in the past, been tested for both things and had normal results. While that is true, her doctors at National Jewish juuuuuuust wanted to double check and make sure, because a hell of a lot of Sophie's symptoms fall in line with these two things.

At first it sounded like Sophie would have to have a nasal biopsy to test for primary ciliary dyskinesia, and that was a hard pill to swallow given that two years ago she had a lung biopsy for the same thing. Apparently there are few places that do the test correctly and up to Dr. Sagel's qualifications, but luckily her's went to the Mayo Clinic, which rules. So the nasal biopsy was nixed. Yay!

Spent 2-3 hours meeting with Dr. Sagel and Sophie had several tests (including spirometry and nitric oxide). Dr. Sagel did an amazing and thorough job of explaining why we can definitively rule out cystic fibrosis and primary ciliary forever and ever. Of course, Sophie is still a carrier for a genetic mutation for CF, and whether or not that could be contributing to stuff is still unknown - the research isn't there to support it.

Um, what else?

Oh, yeah. Denver Children's Hospital is an absolutely beautiful facility - I've never seen such a pretty and fun hospital before. Unfortunately I didn't get any good photos of it. It was a pretty packed place, and it was impossible to get photos of it without violating others' privacy. Anyway.

I actually wrote this post weeks ago, and somehow never finished or posted it. So, um. We're getting ready to leave for Denver yet again, back to Children's Hospital this time with a side trip to National Jewish. Photos for this post coming soon. (And please remember that the word "soon" is all relative.)

Sunday, February 14, 2010

Wow, it's been a while, huh?
Part of it is probably my award-winning procrastination, but mostly I think that I haven't updated because I just don't know what to say. It seems like I like to use this blog when we have big "ah-ha!" moments, but really I should write about all of the doctors' and hospital visits where we're left with more questions than answers. Because that's more of the reality of the situation.

In December Sophie and I traveled back to Colorado for a clinic checkup and more testing at National Jewish. We met with Drs. Spahn and Searing (also known as Dr. McCutiepants). They wanted to see how Sophie was faring on her current medications, check on her sinus disease, and test for Colorado allergens. For a while there it was looking as though we were almost certainly moving back to Colorado, and while it hasn't been ruled out entirely, it's definitely been tabled for the time being.

The beginning of every appointment at National Jewish starts with spirometry, which is pretty tricky to do well. Sophie rocks at it, and her scores are just perfect.

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And then a several hour appointment with Dr. OMG Isn't He Adorable?!

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And then it came time for the allergy testing and blood draw. Sophie used to be so mellow about having lab work done, but then she had a really bad experience, and now she is absolutely terrified of it to the core of her being. Included in that fear is also allergy testing, as it's basically these sharp little sticks scratching your back.
We've been talking about her fears and working on coping skills for quite a while, but in the past nothing had worked. Something changed this time around, and Sophie announced that she thought she could handle it. And she did!

Here she is having her welts measured by the allergy testing woman (who is fabulous).

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And here she's calling her daddy to tell him that she had gotten through the allergy testing and was doing fine. *insert huge sigh of relief here*

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Then it was time for the blood draw. Earlier in the appointment, while I was talking to Dr. May I Please Sit on Your Lap, Sophie had quietly written this on the exam table. That sound you just heard? That was my heart shattering into a million pieces for her.

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But she did it! Everyone at National Jewish is more amazing than I could ever describe properly, but the Child Life Specialist (shown in this photo) along with the nurses are truly incredible at their jobs.

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We also did get to see our beloved Ben, and make the traditional trip to Walrus ice cream (Ben lives right next door now!).

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What we learned from this appointment? Sophie's sinus disease hasn't seemed to improved in spite of almost a year and a half of intense medical management, almost all of Sophie's insane environmental allergies are also present in Colorado (trees and grasses, man. The effing stuff is everywhere), her pulmonary results are almost flawless, and it's time to try out some new medications. Included in these new meds is a long-term (at least six month, possibly a year) antibiotic. After a month and a half of use, we're definitely seeing improvements, but it often hurts Sophie's stomach and makes her feel ill. (Which then, of course, makes us wonder if we're doing the right thing.) Another med change is that we dropped the nasal/sinus steroids that Sophie was shooting up her nose, as her nasal passages are so inflamed that it is doubtful that any of the steroids are actually making it up into her sinuses. Now we dump a vial of Pulmicort (which is usually a nebulized breathing treatment that is used daily as a preventive medication for asthma) straight into her sinus rinses twice a day, and she blasts that up there. A very simple change, but something that I never would have thought of in a million years.

In terms of allergies, Colorado is an improvement over Oklahoma in terms of mold. Oklahoma is a super humid, moist state, and many molds run rampant here, and are one of Sophie's worst triggers. There are obviously fewer nasty molds in Colorado, but would it be enough of an improvement to justify a move? No one can really say at this point.

Next up: a much shorter post about our trip to Denver Children's Hospital in January, and a rundown of our next appointment there in a few weeks.

Saturday, October 17, 2009

What a freaking day.

Last night Sophie developed a fever of 103.1 degrees, so Stephen took night duty to watch over her in our room, and I slept on a mattress on the floor in Felix's room because he's been having constant nightmares. He was up half the night, coughing and sneezing and tossing and turning, so I was a bleary-eyed mess when Stephen woke me up at 8am by saying, "Sophie's at 103.4 degrees. What do we do". What we do, first of all, is beg said husband to start making tea while I find a way to heave my body off the floor.

A call to the on-call pediatrician confirms what we already knew, Sophie needed to be seen immediately. The drive to the hospital was just awful. She whimpered and cried and was just so so sick. The ER was full, but the staff was wonderful and within an hour she had blood work taken, a flu swab, an IV, and a chest xray. She slept on a bench and got IV fluids for an hour and a half while we waited for the pediatric ER to open at 11am.

Over on the pediatric side Sophie slept and slept and slept. Her fever continued to climb, and for a while it was just impossible to get her comfortable. The doctor and nurse over there were fantastic too, and made sure that she was doing as well as possible.

The need for hospitalization mostly stemmed from Sophie's complicated medical stuff. It just didn't make sense to take the risk of going home with her, especially given how she felt at the time.
Luckily over the course of the day she perked up quite a bit. If her fever is down, she can sit up and talk. Otherwise she just sleeps a whole lot.

Right now she's mostly battling with a really bad headache, sore eyes, and a sick stomach. Oxygen saturation is holding at 93-94%, which is okay, especially since she's sleeping.

She very much wants to go home tomorrow, and I think that it will be possible if she continues to do so well from a pulmonary standpoint, but I know better than to get too excited just yet.

Here are some photos from earlier tonight to show that she really is okay. Thanks so much for all of the warm wishes, prayers, and kind words. They mean a lot to all of us.


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This morning I had to take a very sick Sophie to the ER. She tested positive for H1N1, and because of how poorly she was doing coupled with her complicated medical history, they have admitted her to the hospital.

I'll be updating here as I can, but for now please pray or wish her the very best for a speedy recovery. She's a total doll. When we got moved to her hospital room, her nurse explained that she was wearing a gown and mask because she's taking care of some babies, and she needs to protect them from the flu. Sophie (who could barely talk at this point) said, "oh no! Please tell the mommies and daddies that I hope that their babies feel better soon". Most caring child ever born.

More soon.

Friday, September 25, 2009

Wow.

It's been a very intense, very whirlwind month around here.

I wrote Reform for Sophie. We received hundreds of messages and emails.
PBS came out from New York and followed our entire geeky family around for a few days.
Sophie had a third repeat CT scan of her sinuses, and we received very bad news about it.
An ENT recommended more surgery, and also recommended considering a move out of Oklahoma.
Our 12 year old dog, who my brother has cared for for the past year and a half (due to Sophie's allergies) had to be put to sleep.
Stephen has been working night and day on his new record.
We were interviewed by a local news agency.

Meanwhile we're trying to maintain (sometimes to better degrees than others) our exceptional parenting (heh), paying the bills, cleaning the house (on occasion), and all of the other odds and ends that comes with life. It certainly hasn't all been bad or hard, it's just all been...a lot at once.

Now the PBS special has aired, and we LOVE how it came out. We feel that they did a great job capturing our family's story, but more than that, they managed to show the love that we have for each other, and that's the most important thing to us. If you happen to live under a rock and haven't seen it, you can watch online at:

Nat and Stephen feel famous for 25 minutes.

My favorite parts are watching Sophie sitting on her Grammy's lap, talking, laughing and hugging, because that is so them (if Sophie's Grammy is within reaching distance, Sophie is almost definitely going to be planted on her lap), and the very end when the tough bald guy chokes up. He cries at sappy commercials and at every Pixar movie ever released, so it's not surprising to see a few tears, especially when talking about his precious baby girl.

This weekend we plan on doing a whole lot of nothin'. We're going to hang with our friends (seen with us in the special; it's Merica's 29th birthday again, so let's all wish her a good one), sleep in and take naps, and that's about it.

On Monday it's going to be time to face the fact that something must be done with Sophie's sinuses. We're still talking with doctors both here in Tulsa, and in Denver, to decide the best course of treatment. Surgery looks likely, but the folks at National Jewish in Denver would also like Sophie to get further pulmonary, immunology, and allergy testing.
You can see why I'm putting off thinking about it until next week, huh?

And because I know that you guys get grouchy when you have to read my long-windedness without any photos, here are a couple of oldies. Sophie was four here, and we had no idea where things were heading.

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Thursday, September 3, 2009

Our 15 Minutes.

My mind is still blown, and I'm still reeling a bit from nerves and excitement, so you'll have to forgive me if this is scattered all over the place. Buckle down and get ready for the roller coaster that has been our lives for the past week.

On Sunday, August 16th, I wrote a Facebook note called "Reform for Sophie".

On Tuesday, August 25th, I received a phone call from a delightful and sassy PBS producer in New York. She was calling to say that the PBS program, NOW, is working on a documentary about healthcare reform, and they would like to come and film Sophie's story.

Five days later, on Sunday, August 30th, we had two producers sitting in our living room. By 7:30 the next morning, we had two producers, a camera man, and a sound guy. I guess that their program is called NOW for a reason. These folks get stuff done.

So over the past four days a PBS crew has followed our family as we eat, wrangle kids, play at the park, go to the doctor, go potty (not really, but wanted to make sure that you're paying attention), go to Sophie's school, etc. They have met with my parents and our close friends. And they have been absolutely lovely, gracious, and encouraging every step along the way. So if PBS ever calls you up and is all, "hi there. We want to come to your house, like, tomorrow, to film your life", just say yes. They're awesome.

It's been a really amazing journey for our family. While media attention is pretty much the last thing that we would ever be interested in, we immediately felt that this is something important to do, partly because we wanted Sophie to be able to look back years from now and see how much we adore her, and how much we wanted for her. But also because we had an opportunity to stand up and give a voice to all of the messages, emails, and comments that we have received from people struggling in similar situations, and from people in situations so dire and heartbreaking that we'll remember their stories for the rest of our lives.
While those first few days after talking to Brenda were filled with chaos and stress (like, "OMG, how am I going to lose 30 pounds in three days, and we don't have any art on our walls, and please please please Bonnie, please come and help us clean our house"), looking back now, we see what an incredible gift we were given. It was truly a once in a lifetime opportunity, and if you take out all of my neurotic behavior and all of Stephen's uptight Virgo-ness, it was a complete freaking blast.

The producers, camera and sound guys, and interviewer were among the most kind, patient, wonderful people that we've ever met. They dealt with my eye rolling and Felix's five year old behavior with total grace. Maria Hinojosa, the interviewer, stole Sophie's heart within minutes of meeting, and soon after they declared themselves Best Friends Forever.

Today Felix is feeling a bit heartbroken from the loss of "his mans" (camera and sound folks), and Sophie is desperately missing her best friend, but hopefully one day our paths will cross again. Though next time I sort of hope that they don't cross in such a way that requires me to wear prescription strength deodorant and those really awful undies that sucks everything in (they didn't work, BTW).

Huge thanks go to: PBS for being awesome, my parents for putting up with us and for going with the flow, Brad and Merica for still considering us friends, Bonnie Carlson for cleaning our house, Sophie's teacher, principals, and school for being so gracious, Sophie's doctor for being not only handsome, but also well-spoken, OU Pediatrics, - I swear that I am almost done, but this is the equivalent to my academy speech, so suck it up and deal - Allen for mowing our yard, Allen's parents for having him, our mailman for being so prompt each day, and you guys for reading this far.

Special thanks go to our really good friend Karen Szabo of Waller & Company Public Relations, for dealing with my umpteen freaked out phone calls, for encouraging me to avoid horizontal stripes on TV, and for endless other suggestions and recommendations that I likely forgot and screwed up. Any embarrassing behavior that I displayed was not for lack of trying on Karen's part.

Okay, the photos. That's the only reason ya'll are here anyway.


Jeff, the sound guy, getting stuff ready in my parents' much rearranged living room. Jeff's smile is contagious.

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Me with Maria during the interview. Don't we look Very Serious?

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Stephen getting ready to start his interview. The handsome guy powdering his bald head is Don, World's Best Looking Camera Man.

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Sophie and Maria, immediately following Sophie's interview. She's wearing Maria's insanely dangerous high heels here, as they match her outfit. These two pretty much never stopped holding hands or snuggling from this point on, as seen in the next few photos.

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And the whole crew, minus my dad who was taking the photo, at the very tail end of it all.

Left to right is:

Maria and Sophie, pledging their eternal love to each other, my mom behind them, producer Gloria, sound man Jeff, producer Abby, Felix and I, my imaginary boyfriend, Don, my real husband, Stephen, Felix's best friend, Cale, Cale's parents, Merica and Brad, and the final camera guy, Mark.

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Sunday, August 16, 2009

Reform for Sophie.

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I'm writing this today, not because I am out to change anyone's mind, or because I see myself as a political activist, but because our daughter lives with an on-going, critical need for healthcare, and because I want everyone to be able to put a face to the idea of healthcare reform. And what better face than our goofy, gorgeous, brave baby girl's?

Most of you know Sophie, and my guess is that if you know her, you love her. She's just about the most lovable and kind person ever born. But many of you probably don't know about the struggles that Sophie has faced, nor those that we have faced as a family because of her chronic condition. We're pretty private about a lot of this stuff, because, well, it isn't really anyone's business but our own, but I feel like this is an important time for honesty.

We moved from Colorado to Tulsa in Spring, 2003. At that time Sophie was two years old, and was the healthiest kid that you had ever met. In the two years she lived in Colorado, she had one stomach virus and two colds. Within a month of moving to Tulsa, Sophie developed pneumonia. And then weeks after that, she had it again. And then weeks after that, she had it again. This was a frustrating time, but we weren't too worried yet. We just kept going back to the doctor and getting more antibiotics and more steroids.

In summer of 2005, we decided to switch from our private, self-employment insurance that we had used for five years to a new individual plan with a different company. There was a gap between the policies - something that we didn't think anything of, because we simply did not know better. Just as our new plan was set to start, we received a notice from the insurance company stating that they considered Sophie to have a pre-existing pulmonary problem (due to the amount of doctor's visits for pneumonia), and that while they would cover her in general, they wouldn't cover any pulmonary/respiratory issues until she had gone eighteen months without needing medication or problems.

Our reaction: OMG. Actually I believe it was OMFG.

All of a sudden, Sophie was without coverage for pulmonary problems. This was absolutely terrifying. What if she got sick?! What if she needed to be hospitalized?! We spent the next couple of months researching every insurance company that we could, begging them to take Sophie. Nope, it wasn't going to happen.

And then our biggest fear came true: Sophie got very, very sick. And I'm ashamed to say that although we knew that she was incredibly ill, we actually considered keeping her home from the doctor's office, as we knew that this would be yet another strike against her getting insurance. Luckily we pulled our heads out of our asses and took her to the doctor anyway, and it's good that we did, because Sophie was so critically ill that she was sent straight from the doctor's office to ICU. She was so sick that we couldn't even wait for an ambulance; they helped me throw our limp, blue daughter into our car, and I drove like hell to get her to the hospital next door.

Let me state that very clearly one more time: we almost didn't take our baby girl, who was in severe respiratory distress, to the doctor because we knew that it would hurt her chances of getting insurance.

I realize that your reality of living in the U.S. and of health insurance is likely very different than this. But I'm going to ask you to sit for a moment and imagine being in our shoes in that situation. Imagine the shame and guilt of almost keeping your child home from the hospital until it was too late, and then imagine the horror of seeing your child naked in ICU, hooked to many different machines. There is no way to describe how this felt.

One night in ICU? $10,000, not covered by insurance.

After this hospitalization, we were approached by a hospital social worker, who suggested we apply for SoonerCare. SoonerCare is Oklahoma's Medicaid program for kids. Luckily I'm a social worker who was working for a non-profit at the time, so we had no problems meeting financial criteria. (Ha ha. A little social work humor there.) SoonerCare does NOT exclude kids for pre-existing conditions, and it covers Sophie's medications and treatment 100%.

Since that horrible October in 2005, Sophie has needed hundreds of thousands of dollars worth of treatments, hospitalizations, surgeries, medications, testing, and interventions in order to stay strong and healthy, and in some instances, to stay alive.
She has required three bronchoscopies, the middle section of her lung removed, extensive genetic testing, cardiology work ups, dozens of x-rays, CT scans, and a two week trip to a pulmonary hospital in Denver. When she's healthy, she requires three medications, twice a day, and when she's sick she is usually on five or six medications, twice daily. She's been diagnosed with right middle lobe syndrome (though not anymore, since she had it removed), a genetic mutation of cystic fibrosis, severe uncontrollable asthma, and severe sinus disease.

Since SoonerCare is the only insurance to offer comprehensive medical coverage to Sophie, we have to meet their financial criteria, which means living at or below the poverty level. I have had to quit wonderful jobs because I made too much money to qualify for SoonerCare. At this point I can only work either part-time, or for a very small salary, because we CANNOT afford to lose Sophie's healthcare coverage. It's the most important thing in our lives. We structure every single financial and professional decision we make around staying eligible for SoonerCare.

And while we'll gladly continue to live at the poverty level in order to provide our daughter with the healthcare that keeps her alive, we SHOULDN'T HAVE TO.

As I mentioned earlier, I am not out to change anyone's opinion on what the government should do with healthcare. I simply want people to stop for a moment and realize that this issue strongly affects a little girl that they may love, a little girl who didn't ask for any of this, who didn't "bring it on herself", and who would give anything to get to live like a normal, healthy kid.
This problem is not going away for our family, or for the other families who are struggling terribly. It is only going to get more complicated.

If you comment, please keep in mind that I just laid our daughter's medical history and our financial lives on the table, so keep it civil. Any inflammatory remarks will be considered extremely hurtful.