Monday, June 29, 2009

A tale of two near misses.

Saturday morning, KayTar woke up with slightly puffy lips and was wheezing a bit.

Her lips were not nearly as swollen as they were for her previous reactions, but they were noticeably puffier than her usual little pout.

She said her lips felt funny and wanted some Chapstick, so I gave that to her, with a side of Benadryl to prevent the swelling from getting worse, and Albuterol for the wheezing.

I asked her if she had anything to eat at the YMCA the previous night and she said she had, even though they've been instructed not to feed the KayTar due to allergies. She said it was "pop chicken" and she spit it out because it was "so gross it made her THROW UP." (I still haven't been able to reach anyone who knows what she was given on Friday. I think it is unrelated because of the time that had passed, but I still want to know.)

The swelling did not progress any further and she fell asleep for a while. I watched her closely, but she was fine for the remainder of the day.

I don't know if it was an allergic reaction or not. I feel certain it wasn't a reaction to whatever she has reacted to previously, as reactions get worse in intensity, they do not lessen. I will mention it to her new allergist in a few weeks and let her decide what to do with the information.

****

Yesterday afternoon, KayTar said that her head was hurting, so I gave her Tylenol.

Then she said her eyes were hurting, so I held my breath, hoping it wasn't an episode.

Then she said that her eyes were spinny and she couldn't make them stop, so I turned out the light, darkened the windows, got the emesis basin, put down towels and waterproof sheets under her, and laid down with her in the silent, dark room.

She said she felt better. Then she said she felt spinny. She gagged a bit. Then again, she said she felt better.

I suggested that we lay together and rest for a while, she muttered her agreement and fell fast asleep.

A couple of hours later she woke up and was totally fine. She was fine for the rest of the day.

It never turned into an episode, though it sure danced close to the edges.

Tuesday, June 23, 2009

A bit of everything.

BubTar is healing up nicely, thanks to our good friend Amoxicillin. I love that stuff, such delicious childhood memories. I was sick a lot as a kid and me and Amoxicillin had loads of good times together. BubTar still has the rash. Though it has faded, his skin is still sandpapery. His fever and sore throat were gone by the second dose of antibiotics. Truth be told, I'm a bit thankful for the rash. We had planned to wait the sore throat and fever out until Monday before seeing the doctor, until he got the rash that clearly pointed to strep rather than a viral illness. If we had waited, we wouldn't have been able to see OUR pediatrician because she is on a medical mission in Honduras this week. How cool is that?! I can't wait to hear about it. I'm glad we were able to get BubTar treated before she was out of the country, though.

****

We have a new pseudo-theory on KayTar's episodes. It is a loooong shot, but there might be something to it. The only difference in the episode-free 6 months and the episode-riddled last few months, is the TYPE of Pediatric Drink she has been taking. For the episode-free 6 months, she was on name brand Pediasure, thanks to insurance. Once the insurance stopped and the stockpile was gone, we switched to the generic kind. We bought a lot of it and even after she was re-insured, we continued to use the generic kind until it was gone. She recently has started taking Pediasure brand again. Although the formulas are meant to be comparable, if she has a metabolic disorder that is not characterized yet, something as simple as a cheaper type of protein or carbohydrate (or other component) might not be properly utilized by her body. Now that she is back on the Pediasure brand, we'll see what happens with the episodes. The complication of this would be, of course, if she needs such a specific type of nutrient, even if she eats enough table food to equal a Pediasure in calories or proteins, it might not have exactly what she needs. We need to make sure she still gets 3 Pediasures per day, in addition to her table foods. We don't want her table food eating to suffer, so it would be GREAT if we could ever get her feeding pump approved to do a slow overnight feed to keep her balanced. Like I said, it is a long shot, but it is the only change we can pinpoint between the two time periods.

****

My first math course of the summer is halfway over and I'm pulling a 100 so far. Even better than that, I'm ENJOYING it. Math. Who would've thought!? When I was a kid I would get grounded for getting B's in my classes, except in math. B's in math were allowed. It wasn't my subject. That attitude stuck with me and I have a long history of hating math, but after spending the last two summers in math courses, I've discovered that I don't hate it. I actually understand it well and enjoy working through the problems. It is predictable and even a bit comforting. The amount of math involved in premed course work was definitely a concern for me originally, but I think I'll do just fine with it. I do plan on continuing to take my math courses as minis, though, it all seems much more cohesive when condensed into a shorter time period. Four hours of math, three nights a week doesn't leave much time to get rusty.

****

Summer is fun.








Friday, June 19, 2009

Sick kids.

Yesterday, I worked an extra day shift in the emergency center, and I have to report that I'm still thoroughly enjoying myself. I would volunteer every day if I could shoehorn it into my schedule, though, between the kids and school, that would be impossible. As it stands, I had to rope my mom into watching the kids for me yesterday so I could take that shift. I set it up earlier in the week when I thought both kids would be at summer activities on that day, KayTar at camp and BubTar at VBS. Well, there was an incident at KayTar's camp and she wouldn't go back all week. Then, BubTar developed a temperature during the night on Wednesday, so he was home sick from VBS yesterday. Luckily, my mom could watch my sick kid, so I could go take care of other people's sick kids. I didn't want to call in at the last minute.

On Wednesday my shift was so busy that I didn't even get a chance to check in on all the patients a single time! I spent most of the shift doing transport, which I also enjoy, but I wish I could have popped in at least once and checked on the patients. It is hard being trapped in an ER room for hours on end, and I think that just having someone check on you, even if you don't need anything, is helpful. Thursday during the day shift, things were much quieter and though I did quite a bit of transport, I also had enough time to check in on all of the families a few times each. I am only able to do small things, but I think when you are stuck in the emergency center for hours, often all day or all night, those little things can make it a lot easier.

I've seen tiny babies in for rule-out meningitis, and sometimes it hasn't just been a rule out. I've taken kids who seemed hilarious and healthy to the hem-onc floor. I saw a 15 year old come in with chest pain, but the true, underlying story was that she has a three year old at home and was stressed to her breaking point. I've seen lots of children be discharged and taken lots of children to their new inpatient rooms. I've taken many kids for x-rays and CTs. I've delivered toys and books and movies. I've sat with kids so parents can run to the bathroom or to get food. I've answered questions and pointed people in the right direction. I've cleaned used exam rooms and brought patients and families food and drink and blankets. I've realized I need to learn some applicable Spanish to be more effective in my position. I've spent hours on my feet, constantly in motion, and I've loved every minute of it.

Yesterday one of the nurses said, "You are wonderful, who can I tell about you?" I jokingly replied, "Everyone! Tell everyone about me." She smiled and said, "You'll work here one day, I think." I said, "You know, I am a premed." She said, "See! I knew it. You'll definitely work here one day." I think she might be right.

PS: It looks like BubTar little fever and sore throat is probably scarlet fever, OH JOY! He developed the rash while I was in math last night. We're heading to the pediatrician's in a bit for a strep test and antibiotics. He has to stay in the hall while I register him, because he's too infectious for the waiting area. DOUBLE JOY!

(click for larger version)
Poor rashy guy!

Wednesday, June 17, 2009

A Little Off the Top

BubTar got his hair cut for summer yesterday. He was getting so frustrated with his long hair getting in his eyes during swim team that we decided to shave most of it off. As soon as she shaved off the bulk of the length, I thought, "Oh my goodness, there's my baby!" He looked so like his baby/toddler self without all that hair, I may have even gasped aloud when he looked over at me to give me a thunbs up, his seal of approval. After he was done, he stood up and unfolded himself from underneath the barber's cape, I was shocked to see how tall and mature he is. Every time I've looked at him since, I've had the same experience. "Oh my baby! Oh my big kid!" I'll adjust to his new look soon, but for now each and every time I see him, I see both the past and present etched on his face simultaneously, my baby who is now such a big kid.



I started the blog the month this photo was taken, I can't believe he's grown so much in that time!


Friday, June 12, 2009

Not all work and no play...




Thursday, June 11, 2009

First Week of Summer

We've completed half of the first week of Busiest Summer Ever, and so far, so good!

Josh started his summer classes on Monday. He is taking Composition II and a criminal justice course this summer. Since he decided to hop on the school bandwagon after me and because I have 3 million more years of school ahead of me, my class schedules are the priority, but he's found a way to fit a couple in, too. His boss is allowing him to come in later in the morning in exchange of his lunch break, so he can squeeze classes in. When I get home at night, the kiddos are in bed and he's busily studying. It is nice not to be the only person around here with my nose in a book!

I started the first of my two summer classes on Monday, as well. The teacher is roughly my age and a little green, but most of what we are covering is review for me so I think it will be just fine. I'm a little worried for some of my classmates, though, we've just started and a handful of them are overwhelmed and confused already. We have a test next week, as well as every other week, because it is only a 5 week course, after tonight there are only 4 weeks left! Then I start the next one...

BubTar started swim team on Tuesday night. He had a great time. He knows one of the other boys from school and I know his coach because I used to teach her! He's already trying new things in the water and practicing his laps when we go to my mom's house for swimming, and I think he'll really enjoy swim team!

Last night, I had my first volunteer shift in the emergency center at the Children's Hospital. I loved it! I got there early and stayed late, even. It was fun just to be in the ER, but it was even better because we've personally been in that ER several times and having the chance to walk around and try to make it easier on the parents and patients was extremely satisfying. I just did little things; checking in on the families to see if they needed anything, bringing movies, toys, and books to the kids, transporting patients, sitting with the kids if the parents needed to leave the room, checking in at the various nursing desks to see if they needed anything, that sort of thing...but it was really wonderful. The nurses were great and seemed to really appreciate it. When I left one of the nurses said, "My patients were better cared for because you were here tonight." I'm already looking forward to my shift next week, though my feet were really beat up last night (I didn't know you could get blisters this size!) and I need to fix the footwear situation first.

Tonight it is back to math and swim team, tomorrow night it is my turn to take BubTar to swim team, and Saturday is that endangered creature known as a Free Day! Whatever will we DO? We should probably rest a bit, because next week we add in KayTar's day camp and BubTar's VBS to this crazy schedule!

Wednesday, June 10, 2009

Wordless Wednesday: Yum.



Monday, June 08, 2009

First Day/Last Day

This is what I planned to post last Friday, before my blogging plans were precluded by that rather nasty episode. Friday was KayTar's last day of the first year of KayTar's school life. She had such a wonderful year and when I said goodbye to her teachers I had to pretend that it wasn't the end of the year to prevent myself from crying. They've been so wonderful with her and we will really miss them all, her teachers, her aides, and all the other teachers in the PPCD department. They've all taken a shine to KayTar, and she to them. I'm looking forward to her new program next year, but I hope the staff is as wonderful as the one at her current campus.

I was so nervous when she started school, my sickly, quite delayed, partially deaf, odd-duck of a little darling going off on her own for the first time. It has been wonderful, though, we've watched our quirky little caterpillar bloom into a social butterfly. So many of her developmental gaps have closed and she met most of her IEP goals for the year.

Medically speaking, her hearing loss progressed from moderate-severe to profound, rendering the cute little purple hearing aid useless. She had surgery to have her tonsils and adenoids removed and to have a g-button placed, which markedly improved her health and overall development. She missed over half of her first semester due to illness, but post-op, her attendance really improved. She has gained both height and weight this year, since having her tube placed (you might notice how much shorter her jumper is in the second set of photos, it is about 2 inches shorter on her in spite of lengthening it a bit). Her episodes stopped...and then restarted. She acquired a scary food allergy, which we suspect to be peanuts. We did more testing and still received no answers.

Developmentally speaking, her speech has normalized. The tendency she had to speak in direct quotes and parrot questions back to us is gone. She's fully conversational now and she uses this skill nearly non-stop. She can now walk across uneven ground, such as grass or mulch at the playground most of the time. She can walk up stairs in an upright position, relying on her stronger leg to do the work, sometimes without the handrail if I am scaffolding her. She can jump with two feet off the floor. She learned to write her own name.

It has been a big year for our little girl and we could not be more proud of everything she has accomplished!


First Day



Last Day





Coincidentally, today is MY first day of school for the summer semester. Too much math, here I come! Today starts the craziness that is school on Monday, Tuesday, Thursday nights and volunteering on Wednesday nights, not to mention BubTar's swim team practice on Tuesday, Thursday, and Friday nights. Let's not discuss VBS and KayTar's camps or the fact that Josh is also taking summer courses. Isn't summer relaxing?

Saturday, June 06, 2009

Record Breaker

KayTar had an episode yesterday.

It didn't end until today.

Yesterday, around 1 in the afternoon, she called out, "Mom, my eyes are sick!" and quickly followed that with "I feel spinny!" She was leaning her face against the sofa in an effort to stabilize herself. I took her to lay down and gave her transdermal Zofran, just in case. She was completely lucid for an hour, only complaining of the dizziness. She couldn't sit up or stand, which she thought was hilarious at the time. She was acting a little goofy, too. During this time I noticed her eyeballs making tiny back and forth circular movement, like nystagmus, but rotational rather than side to side or up and down. They were very small scale movements, unlike the larger rolling eye movements we've seen in the past with these.

About an hour into the episode, she started vomiting, and that was quickly followed by the onset of the lethargy and pain. It was extremely painful for her. She would let out scream after scream when the pain hit her, then it would subside...then reemerge. I gave her Lortab, but it didn't seem to touch it. She continued to vomit in spite of the Zofran, too. She was incredibly light sensitive, too. We blacked out the windows and turned out the lights and she still kept a blanket on her face. It went on for hours. Seventeen and a half hours.

I went to bed, next to her, around midnight. I wanted to get a little nap because I was sure it would be over soon and she would be wide awake, but that didn't happen. She woke several times in the night, but was still unbearably light sensitive and sick. This morning she woke up around 6:30, back to her old self, all the symptoms were gone.

To my recollection, this is the worst episode she has ever had. The previous record for length was only 11 hours. The last time she had one that involved pain, it was April 2007. They are coming regularly again, it has been 38 days since the previous episode, which was 38 days after the one before that. We don't know why the episodes stopped for six months, but it is obvious that these are now back, following a schedule just like they used to.

I felt useless yesterday. I gave her medications, made the room dark and quiet for her, wiped vomit from her face and body repeatedly, but I couldn't do anything to help her. The medications weren't effective against this. As dark as the room was, it didn't relieve any of her agony. As soon as I wiped away the vomit, more spilled out of her. I could do nothing except wait for it to end, wait for her to feel better, wait for her to come back to me, and this time it took much too long.

Thursday, June 04, 2009

25, going on 16.

A few of months ago, I had dinner with our pediatrician to discuss medical school, residency, and balancing a medical career with having children at home. The waiter took my drink order and promptly asked for my ID. No big deal, I always get carded. Always. I pulled out my wallet and reached for my ID and only find my college ID. No birth date. I dug through my purse, but still couldn't find my driver's license.

He didn't serve me.

In the car, after dinner, I found my ID. In my wallet. Hiding behind another card.

****

A few weeks ago, I went to a Babysitter Mixer with Julie. If you haven't been to one of these, it is like speed dating for childcare options. Helpful if you don't know any sitters, and are uncomfortable approaching random people on the street and asking, "Hey! Would you like to tube feed my child?" Instead, it went something like this:

"Hi! My name is Kyla, I have a 7 year old and 4 year old. My 4 year old has special medical needs; feeding tube, various medications, asthma, food allergy, epipen. Are you comfortable with that sort of thing? We have a cat and a dog, are you okay with animals? Do you have CPR certification? Is transportation an issue for you? How much do you charge?"

Shockingly, I found quite a few takers and not a single person ran away screaming from my little introduction. One of the sitters is even going to college for a degree in Special Education. SCORE!

However, I was mistaken for a sitter THREE times. The last one takes the cake, though. This conversation was between, me, Julie, and Julie's friend.

Julie's friend: I didn't get a chance to meet you, what's your name?

Me: Kyla, I'm here with Julie.

Julie's friend: Oh! How did you meet?

Me and Julie: Online.

Julie's friend: Did you find any good job prospects (thinking I'm a sitter)?

Me: Oh! No. I'm a mom looking for a sitter.

Julie's friend: Oh my gosh! I'm so sorry, but I was thinking GOOD LORD, WHY IS JULIE PICKING UP TEENAGERS ONLINE?!

****

Last night I had training for volunteering in the pediatric ER. Most of us were there early, but we had to wait until 15 after to start, in case any stragglers showed at the last minute.

As we were waiting, the other volunteers, who happened to all be junior volunteers, started discussing what HIGH SCHOOLS they attended. Everyone named the school they attended, while I sat there quietly, and then they all looked at me and waited, expecting me to name my high school, too.

The girl next to me said, "Well, where do you go to school? Wait--do you go to school? You do, right?"

I said, "Well, not to high school, but I'm a college student, a premed."

Everyone looked surprised and a few people said, "You don't LOOK like you are in college already."

I said, "Yeah, I'm married and have two kids, too."

Their jaws collectively hit the conference table.

Tuesday, June 02, 2009

My child, every child.

I have a medically needy child.

Every day, she needs Qvar, Miralax, and specially compounded Prevacid.

Most days, she also needs Albuterol and Benadryl.

Some days, she needs Zofran for vomiting, Triamcinalone for granulation tissue, Vusion for her g-button site, too.

We never leave the house without her EpiPens, Benadryl, Zofran, Albuterol and spacer mask, in case of allergic reaction, asthma attack, or neurological episode.

She has a feeding tube and receives 3-4 daily feeds on average. This requires shipments of Pediasure and tube attachments on a regular basis.

She sees 9 physicians for a variety of issues that are without overall diagnosis; our pediatrician for regular medical issues, a neurologist for her episodes and underlying neurological problems, a geneticist, an ENT for her profound unilateral hearing loss, a GI/feeding disorders specialist for her constipation and feeding problems, an ophthalmologist for her minor sight impairment, a pediatric surgeon for her g-button placement and subsequent checks, an orthopedist for her joint ad muscle problems, and an allergist for her curious food allergy.

She needs weekly therapies, occupational to help her overcome her food aversions and physical to help her strengthen her muscles and improve her balance.

She is also uninsurable according to the for-profit insurance sector.

She has been uninsured twice in the past year, through no fault of ours, and while we are incredibly thankful for the CHIP plan she is currently covered by, to get her enrolled my husband has had to take a pay cut and we've had to pay for unnecessary childcare to lower our income sufficiently for qualification. There are currently no other options for her and without insurance, we could not provide for her basic medical needs.

This year I've worked with some wonderful people and organizations attempting to rectify this situation in our state by creating a CHIP buy-in program for children who have no other insurance options, but are above the 200% FPL cut-off guideline. I've shared our story several times, at the Texas Capitol, at the United States Capitol, in a magazine, in newspapers across our state, on television, and at a few other speaking engagements. I've done what small part I could to raise awareness on this issue, because before it happened to our family, we simply did not know it happened. We did not know that there were good, hardworking men and women who wanted and needed insurance for themselves or for their kids and it simply was not available to them. The bill that was created to cover these kids was a solid, bipartisan supported bill and we felt that it had a great chance of being passed. Unfortunately for the children in our state, the legislative body allowed another issue, namely Voter ID, to crowd out this CHIP bill and last night the House of Representatives closed session without ever voting on it.

We, as a family, were counting on this. 80,000 other Texas families were counting on this. The uninsured children in our state were counting on this. And in the end, despite rallying over 1,000 calls to the Speaker's office, the issue was treated as if it were unimportant, left to die without even a vote. In spite of the Voter ID clogging, this bill could have survived if action was taken. Our state Senate passed it out THREE times, but the House dropped the ball repeatedly. Though, even if the House had voted it through, our governor had already expressed his disapproval and likely would have vetoed it. This is why Texas is the national leader in number of uninsured children, because they simply are not a priority when it comes time for action, and I find that inexcusable.

Instead of breathing that long awaited sigh of relief, last night my husband and I discussed what to do next. In a few months, he's due to receive another raise and the following month we will have an income check. He's going to have to request that he not receive a raise this year, to prevent our children from being dropped from the program. And next year? And the next? We will continue to do this for as long as necessary to provide KayTar access to the medical care she needs, but it should not be this way. Every child deserves access to affordable comprehensive medical care, regardless of their health status or income. Healthy or sick. Rich or poor. Yours or mine. Every child.

Even this child.


Cross posted at Hopeful Parents.

Monday, June 01, 2009

Things KayTar says...

While looking through my anatomy textbook with me :
"Oh! Its like a computer that you can turn the pages!"

After being told that I need some quiet time to make business calls:
"FIRST get me Pediasure and cartoons, THEN make your business calls."

When getting creative with song lyrics:
"I like to poop it, poop it!"

And the hit sequel...
"P-p-p-poopoo face, p-p-poopoo face!"

On familial relationships:
"Daddy is my favorite! Mommy, you can have BubTar."

"Daddy is the prettiest! Mommy, you can be the awesomest."


After incorporating "ain't" into her vocabulary, I asked her where she learned that word:
"I ain't gonna tell you."

When having her blood pressure taken:
"It is hugging me because it is full with loooove."

As I'm buckling her into her carseat:
"Hey baby, wanna go for a ride?"

On wardrobe:
"You're a farmer and I'm a princess." (what?) "You wear (with disdain in her voice) JEANS. And I wear (with a soft and dreamy voice) dresses! That's why I'm a princess and you're a farmer."

On medical ethics, namely "First do no harm.":
"Well, when the nurse poked me with that needle? That hurt. She HARMED me."

At random times:
"Mom, you're an ol' coot!"