Sunday, March 29, 2009

Shifting

The meeting with my premed advisor went well. Now I have a definitive plan of how best to use the next year while I am still limited to evening classes, before I transfer out to university for a full daytime schedule of classes while KayTar is in Kindergarten.

This summer I'll be in classes for both sessions, Algebra followed by Pre-Calculus. (I don't love math and have put these courses off for QUITE a while). The first session is from June 8 to July 9, Monday, Tuesday, Thursday classes from 6:30-9:30pm. I'll also be volunteering at the hospital one evening starting at the end of May, which will mean I'm out of the house on Wednesday nights, too. Monday, Tuesday, Wednesday, Thursday nights are full. The second session is July 13-August 13 and will stick to the same schedule. Josh will get home, Monday through Thursday and I'll be on my way out the door.

In the fall, I'll be taking Comp II, Biology I, and (inorganic) Chemistry I along the respective labs, which puts me out of the house four evenings a week, plus volunteering at the hospital one additional night, probably Friday as the others are already taken. Monday, Tuesday, Wednesday, Thursday, Friday nights are full. The spring will follow the same schedule, just a switchover to Bio II and Chem II. Life is going to get quite a bit busier around here before we know it. I'll have the kids during the day, Josh will have them at night, and the only time we will all be together will be the weekends, a portion of which will be devoted to studying.

I've been a bit bored today, even though it is Special Sunday (a recent family event we've created in which each child alternately gets to choose a family activity for Sunday). KayTar's big plan for the day was running to Target to spend a gift card from her birthday, which was over in about 30 minutes. The rest of the day has been spent watching TV, reading my textbook, playing outside with the kids, laundering clothes, running to the grocery store, along with another half dozen other time fillers...and still, I spent the most of the day lamenting a low level boredom, longing for something that MUST be done, something to fill up all of that formless time. Today, even as I twiddled my thumbs and hoped in vain for something tangible to do, I recognized that in a just over two months I will surely be longing for these empty sort of days, because there simply won't be any to be found.

Friday, March 27, 2009

If you're looking for generic Pediasure...


We took it all, sorry.

Thursday, March 26, 2009

To achieve maximum neurosis,

the best follow up to an episode is a super late period/pee on a stick/pregnancy scare, preferably on the heels of making a major life decision...say, the decision to devote the next 12 or so years of your life to medical training.

So yeah, that happened. And then THAT happened. It has been an awesome week.

Let's check in on the list, shall we?

No one in our house has been sick this year!

KayTar hasn't had an episode all year!

I haven't emailed our pediatrician once this year!

My kids have not been absent from school a single time this year!


KayTar hasn't had to go to the hospital all year!

KayTar hasn't vomited at all this year!

Neither of my children have been to the pediatrician's office this year!


On the bright side, it took until mid-March to get down to last man standing. That's an improvement over years past.

The next time she has an episode, that last one will go bye-bye, too, because we are planning to take her to the hospital for a full workup the next go 'round (as long as she is insured, which is NOT currently the situation). Because, let's face it, there will be a next time. It has been years since she has been evaluated in the hospital for an episode and at that point they were still so short, she was out of the episode before we arrived at the hospital. I know they can't do much of anything to treat her in the hospital that we can't do at home, but we need her to be assessed in the throes of it. Josh and I both feel like we really lost something with this last episode. We lost the idea that she was free from these monsters and it was a tough blow. It is hard to see your kid go through something like that over and over, helpless to save her from it. We're done being patient with the little bastards, though.

I was going to take her back to the butterflies this weekend, but she doesn't want to go. She doesn't want to get sick again. These things were much less heart wrenching before she was so verbal and they already packed the emotional punch of a ton of bricks to the gut.

That's all I've got, folks. This afternoon I have a meeting with the premed advisor. It is happening. Dude.

Monday, March 23, 2009

What happened?

Part of me would like to deconstruct this whole episode, and the other part would just like to say "F*ck it." and go back to pretending that they aren't going to keep happening, but since I don't use that kind of the language on the blog, I guess that leaves us with the deconstruction.

I don't know where to start. It was a bad one...I smirk as I say that, as if there are ever good ones. It lasted from 2pm-8:30pm. 6.5 hours, not the worst, not the best. I know I say things like altered consciousness but I don't know that it communicates the reality. She goes from being my KayTar to being a limp little girl who cannot open her eyes, lift her head, respond to anything I say, who only responds to pain and even then, barely. It is a significant, clinically relevant decrease consciousness, this isn't a deep sleep or a lethargic child, it is way beyond that. It is the most unsettling part for me. She woke up and said, "I thought I was asleep on your pants, but I was in your bed!" (she laid her head on my lap in the museum foyer, that was about the time she stopped responding to me). It seems like she doesn't remember anything about the interim. I asked her what happened and she said, "I felt spinny and went to sleep on your pants." After she was out of the episode, I gave her a much needed bath. I think tried to give some Pedialyte through her g-button, she vomited it up as I was putting it in. She continued to vomit everything up all night long. Typically, when an episode is over, it is over...vomiting included. Around midnight I gave Zofran and a teaspoon of water and we promptly went to bed, it stayed down, thankfully. In the morning she continued to vomit. Finally around noon, she started holding down teaspoons of Pedialyte through her g-button and by bedtime, she had kept down about 8 ounces of fluid. Initially, I thought maybe she had a stomach virus secondary to the episode, but today I really think it was just residual effects of the episode.

So why did it happen in the first place, after 6 glorious episode-free months?

It was an exciting day, but we've had a great many exciting days in the last 6 months.

We took a car ride into the city, but we've had countless rides into the city since the last episode.

It was a sunny day, but there have been many sunny days since these stopped in September.

She seems to be sick now, coughing, stuffy nose and so forth, but she has been sick dozens of times in the past 6 months without incident.

On Friday, she had 2 Pediasure feeds instead of 3, because she wanted to drink the last one and didn't quite do it. On Saturday, she only had only had her first feed by the time the episode started. We've had other days where her feeding schedule was slightly altered and this didn't happen.

My mom took care of the kids on Thursday while I went to Austin to give my speech in front of the House committee, and she noticed KayTar's eyes do that odd thing (click here for video) they used to do so frequently. We haven't seen it happen in ages. Is it related?

Honestly, I don't know what happened or why it happened. I don't know when it might happen again. I just wish it hadn't happened at all. I wish she was free of these things. I can't articulate how much I hate watching her slip away from me; how difficult it is to twiddle my thumbs for hours while she is unreachable; how I repeatedly wander into the room where she sleeps, cuddling up next to her, stroking her hair, and whispering into her little ears that can't seem to hear me; how I have to wipe the vomit from her mouth and nose, because she isn't lucid enough to move her own head; how every time I hear her moan I come running, hoping that maybe she is emerging; how I feel sick every minute until she finally opens her beautiful blue eyes and says, "I'm better."

Saturday, March 21, 2009

I liked it better when I had nothing to talk about.

This morning the boys left to go camping, so KayTar and I planned our own special day. I suggested the zoo, but she nixed that because the lions might ROAR at her. We settled on a Happy Meal for lunch, followed by a trip to the science museum to see the butterflies.

We picked up our food and headed downtown to the museum. She took a nap in the car and woke up shortly before we parked. Parking was insane, but we finally found a spot and started to walk towards the museum. She was holding my hand and then grabbed onto my arm with both her little hands, leaning her weight on me. She said, "I need you to carry me." and as I picked her up she went limp. At the point, she was still responding to questions and I thought, hoped, that the sun was just making her feel sick and entering the museum would help.

We walked into the lobby and I was able to rouse her. She said, "I'm sick. I have a fever. Carry me to the butterflies." before she fell out of consciousness again. I called Josh and then carried her back to the car. She threw up on the way. Once we were in the car, she was screaming and crying. She said, "Why do my eyes always DO THIS?" She was writhing and smacking her hands together angrily. My poor baby. Eventually she dropped out of consciousness and by the time we got home, she was no longer crying, but she wasn't responding to me anymore either. She still isn't.

I gave her 9 ounces of Pedialyte when we first got home, but she started vomiting about 30 minutes ago and everything has come back up. I administered transdermal Zofran, but I don't know that it will help. I had to move her a little to get a towel underneath her and wipe her up a little and she started screaming. That's the only response I've gotten from her in hours. These things make her so sick and I hate to watch her slip away, unable to do anything to stave it off or bring her back. I had started to believe these episodes were a thing of the past and I'm just devastated that evidently, that isn't the case.

It has already been 4 hours. I hope my girl comes back soon.

Wednesday, March 18, 2009

Seriously, she can sleep anywhere.

Sunday, March 15, 2009

I could write...

I haven't been writing much lately, eh? What's up with that?

I don't know, honestly. I sit down to write a few times a week and....nothing. Life has been pretty kosher lately, calm and even keeled. KayTar has been healthy for 6 weeks (minus her minor illness on her birthday) and we've just been sailing on through. It is odd and wonderful and I'm appreciating it through silence, subconsciously trying to postpone the inevitable jinx.

There are things to write about, like how KayTar brought home a gift from a BOY earlier this week, an older boy who has taken quite a shine to our KayTar. He's a five year old from the older PPCD class and he likes her so much that his reward for good behavior is being allowed to stop by her classroom and tell her hello. He made her a poster sized collage of leaves (he collects leaves), that says, "To KayTar (heart) From J". How adorable is that?

I could write about how KayTar's nighttime coughing/vomiting cycles haven't relented in spite of 6 weeks of health and various asthma medication adjustments, so we're starting to think it might just be long term undiagnosed reflux that triggers the nocturnal exacerbations, as it has been happening since infancy without fail. The pediatrician has started her on Prevacid, but it is seemingly IMPOSSIBLE to administer via g-button due to clogging and regurgitation from the valve (seriously, if anyone knows the trick to this, please let me know!) so we have no clue whether it will help or not. I have to call the magical compounding pharmacist on Monday and see if he can whip up a magical potion for us.

I could write about how I'm 99.7% sure I'm going to switch to premed next semester, about how I'm excited and terrified all at once.

I could post some cute photos, like these from an impromptu nap...





I could write about how I'm going to Austin on Thursday to testify in front of our state House, also exciting and terrifying.

I could write about a lot of things at length, but for now, these snippets will have to suffice.

Friday, March 06, 2009

The Speech, Remix Edition

Did you know I hate public speaking? Well, I do. And yet, today I spoke at a conference here in town about the expansion of our SCHIP program to include a buy-in program for families at 200%-300% of a federal poverty level, namely how such an expansion is not only socially responsible but also fiscally responsible for our state. It was an amazing gathering of people, important business leaders in our city and state, political figures, people from the medical community...it was just generally a really wonderful showing. It was also a room FULL of people and one small me, with a major case of stage fright. Somehow, though, I found my voice and stopped my knees from knocking long enough to squeak this out:

Hello, my name is Kyla [LastName] and in February of 2008 my daughter lost her health insurance. She had been covered by the Texas Children's Individual Health Plan which chose to close its program in early 2008. When I discovered we would have to find alternate coverage, I didn't expect any problems. I thought we could simply move to another individual insurance plan. When I actually applied for this coverage, I discovered that wasn't the case.

My daughter, [KayTar], has an undiagnosed neurological condition that affects several of her bodies' systems. It has caused brain lesions, debilitating neurological attacks, progressive hearing loss, a feeding disorder, sensory processing disorder, gross motor delays, muscle weakness, chronic constipation, asthma, and a higher rate of illness than typical children her age experience. She has needed developmental therapies to teach her to do the things that come naturally to most children, like walking, talking, and eating. She sees a team of physicians that treat her specific symptoms, and also continue to search for an underlying cause for her condition so we can treat her more effectively.

Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to our state High Risk Pool, which was created for children like [KayTar], however, we are not eligible for this program because my husband's employer offers group coverage. Unfortunately for us, the group coverage is not an option either.

My husband's group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of [KayTar]'s therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. [KayTar]'s therapies alone cost over $400 per week. A single genetic laboratory test can cost well over $3,000. It does not make sense to pay nearly $1000 per month on an insurance plan that will not cover necessary testing and treatment.

Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, [KayTar] was without vital therapies and specialized medical care for four months. During that time, multiple physician appointments were canceled and her therapies had to be discontinued.

Her feeding situation has declined so much so that she had a feeding tube surgically placed in November to help maintain her nutritional needs. However, while she was without coverage, we couldn't even take her in to see the physician in charge of this portion of her care and we were unable to continue the therapy that helps her develop the abilities that are necessary for eating. There simply are no treatments or therapeutic options for her without access to affordable, comprehensive healthcare coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for more than 5 years. He is a reliable employee; I can count the number of sick days he's taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children's health coverage, this has never been the issue. The problem is that no one will give us the opportunity to do so. The only plan that is willing to cover my daughter and provide adequate coverage is our state CHIP plan, but we are $260 dollars over the monthly income limit for CHIP.

We had no other options when we contacted the Children's Defense Fund. We were at absolute end of our insurance search. Because we had no other viable options, my husband had even requested a pay cut to lower our income enough so that our children could qualify for coverage, but his employer never answered his request. I am happy to say that with the help of the Children's Defense Fund we were finally able to get our children into the CHIP plan, but to do so, we had to pay for unnecessary childcare to effectively lower our income enough to become eligible for the program.

While I am so thankful for this allowed deduction and believe it to be a great step forward, for our families like ours it should not be the only way to qualify for proper healthcare. We are not looking for something for nothing, we just want our children to have access to the care they need. We have always been willing to pay for this coverage, to pay into the system we are using, but unfortunately, no one will allow us to.

Our situation was further complicated in December after my husband received an automatic 3% cost of living raise. This put us $20.54 above the CHIP income cut off and once again he had to approach his employer and request that his pay be lowered. During the time it took to have his salary lowered, our children lost their insurance coverage again due to that negligible pay increase and we are currently awaiting their reinstatement into the program. It seems unbelievable that a cost of living raise can become a major crisis, but it is when our children's health hangs in the balance.

This can be changed and our state leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. If the CHIP program could be modified so that families like ours could pay into the system to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are approximately 500,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number.


And then I got a standing ovation. It was awesome and overwhelming.

I also had the opportunity to speak with a lot of amazing people and do quite a bit of hand shaking and receive an embarrassing amount of compliments. No one seemed to buy the whole, "This isn't my forte! I get incredibly nervous up there!" story. I even spoke with someone who thinks she will be able to get the kids' SCHIP restart date pushed up. She is working on it and hopefully we will hear something next week.

As much as it pains me to gear up for these speeches (and it DOES pain me, oh the anxiety!), I continue to do it because I believe it is so important to get our story out there, the story that hardworking, responsible people can be left without recourse, that sick children are denied coverage to the care they are so very dependent on, that this doesn't only happen to THOSE people, it can happen to you, because it happened to me. Our system is broken and there are innocent people tumbling through these very large cracks every day and like it or not, we are all paying for it, socially and fiscally...and in the end, these uninsured children are paying the highest price of all.

In the end, I'm always so pleased to have the opportunity to share our story and as soon as I'm done speaking and the anxiety dissipates, I'm extremely satisfied with the work we are doing and the outcome of conferences like this one. When the facts (like it would cost every taxpayer in our state only .90 each month to provide coverage for those 500,000 uninsured children in our state. NINETY CENTS!) are presented in a forum like this, it really does make and impact and I am proud to be a small part of advocating for an issue that is so important.


PS: If you are a local, I also did an interview that should air on Houston Public Radio on Monday morning during drive time. Lan Bentsen and Barbara Best were also interviewed and it should be really wonderful. Tune in if you are able!

Sunday, March 01, 2009

The Baconator.

We don't go out to eat with the kids much. We might go to a family friendly restaurant 2-4 times in a calendar year. We generally prefer restaurants with an outside deck and play area, so KayTar isn't stuck at the table with us. Taking a food hater with a variety of sensory issues out to a noisy crowded restaurant to watch people eat can be problematic, so imagine my surprise when KayTar became exceedingly excited while passing an IHOP restaurant earlier in the week. "There is an IHOP! IHOP is my favorite restaurant!" I asked her, "Do you know what kind of food they have there?" She said no and I told her, "Bacon and sausage and toast!" which are all things on her acceptable list. This information sent her over the moon! I told Josh about it and we decided to give it a shot. KayTar has been looking forward to it all week and surprisingly, it was a success!

She told the server (who we happened to know) that we needed a table for four and when he asked is a booth would be alright, she said, with a bit an attitude, "Oh, I guess that will be fine." When it was time to order, she settled on a Dr. Pepper and a side of bacon (she specified "the tall kind" so she didn't end up with bacon bits). 2 pieces. She waited patiently for her food. She used the syrup (which she likes to pronounce "SY-rup") as a puppet and asked everyone at the table questions, for example, "Hi, my name is Syrup! Do you want to eat me?". She ate both pieces of bacon and then ordered two more, which she also ate. She was delightful and well-mannered, minus one small screaming outburst when she realized I had borrowed her fork without permission (in my defense, I thought it was Josh's fork). The highlight was that we went out to dinner and she ATE. Miracles do happen.

She's been eating well (for her) lately. This morning she had a sausage patty and a small powdered sugar donut for breakfast. At lunchtime, she had a serving of chips. For dinner, she had the four pieces of bacon at IHOP. The foods she will accept on a semi-regular basis are:

white bread
croutons ("those squares with the flavor grass on them")
sandwich crackers
chips
jarred baby food veggies (mostly peas)
patty sausage
bacon
vienna sausage
sandwich meat
sunbutter "ice cream" (we keep the sunbutter in the fridge)
french fries
chicken nuggets
homemade cupcakes and icing
shredded cheese
mashed potatoes
homemade guacamole
pepperoni
jerky
cold pizza (if we order a pizza, we have to put her slice in the freezer so it congeals)

It isn't a huge list or a healthy list, but it is a massive improvement. In addition to the expanded list, she is also accepting the foods on a more regular basis. Usually her school lunch consists of one the meats she likes, either chips or bread, and a baby food veggie. She usually eats a pretty good percentage of the food I send. She still isn't approaching anything near a typical four year old's eating schedule or diet, but she has been making steady progress. She still needs 3 tube feeds on an average eating day and 4 on a day she doesn't take anything by mouth, but she is enjoying the food she does eat a little bit more, I think. Most days she asks for a snack at least once, that in and of itself is significant. She's had many ups and downs in her sordid history with food, so I know this may or may not be a lasting improvement, but we're still glad to see her relationship with food evolving towards something that might one day be pleasant. For now, though, she has the freedom to eat what she wants when she wants it, and she is still getting all of the nutrients she needs. It is ideal and we could not be happier to see her thriving from the steady nutrition and also utilizing the freedom to explore the joys of eating at her own pace.