In less than 160 characters, via Twitter:
K couldn't catch her breath in the car, started vomiting, turning splotchy. I almost had a heart attack. OMG.
Slightly wordier version:
Josh's car broke down on Thursday. We had to have it towed to the car shop and yesterday it was ready to be picked up. KayTar is still quite sick and I had spent the day tracking her ins and outs (there were no outs to track, she went over 24 hours without peeing), giving her feeds that she vomited back up, and trying to control her cough so she could breathe. Honestly, I was a little weary of it all. The infinite sickness, and the perpetual worries about her intake and her lack of urine, and the wheezing and coughing and vomiting and fever. Regardless of the illness, we took Josh to the shop to pick up the car. I dropped him off and the kids and I headed back home.
KayTar had been coughing the entire way there, horrible gasping coughs, one after another, after another, after another. On the way home it was the same, and then, it wasn't. I'm not even sure at this point what order things happened in. I just know there was coughing, vomiting, NOT BREATHING, and the next thing I knew she was turning colors in my rearview mirror. My baby, splotchy and not breathing. I pulled over across a couple of lanes of traffic and just as I stopped, she caught her breath. Then I caught mine. We were less than a minute from home, so I kept driving. I got stuck at one of those left hand turns without a protected signal, so I ran it when it turned red. I figured the cop would be lenient if I told him my kid had stopped breathing. The rest of the way home she was gagging and sputtering, but breathing. We made it home safely and she didn't have another incident like that one.
I've never been scared like that. There have been many scary moments, terrible episodes, even insane lip swelling from an allergic reaction just this week, but none of it measures up to looking in that rearview mirror and seeing my baby suffocating, even if it was only for an instant or two...because what if it hadn't only been for an instant?
Today we're headed back to the pediatrician to get her lungs listened to just to be on the safe side, and I'm definitely adding this to the list of experiences I'd never like to repeat. I was thankful for her stuffy, snoring little nose last night, because every time I stirred it reminded me that she was still there next to me, breathing in and out steadily, just like she always should.
Saturday, December 20, 2008
Friday, December 19, 2008
Please spell the following word, "Disgusting."
CAN I HAVE THE DEFINITION?
Causing disgust; offensive to the physical, moral, or aesthetic taste.
CAN YOU USE IT IN A SENTENCE?
I was tube feeding my child and she vomited, proceeded to wipe some off her chest with her finger, lick it, and say, "Mmmm! Pediasure! It is so sweet!"; it was disgusting.
D-I-S-G-U-S-T-I-N-G.
Causing disgust; offensive to the physical, moral, or aesthetic taste.
CAN YOU USE IT IN A SENTENCE?
I was tube feeding my child and she vomited, proceeded to wipe some off her chest with her finger, lick it, and say, "Mmmm! Pediasure! It is so sweet!"; it was disgusting.
D-I-S-G-U-S-T-I-N-G.
Thursday, December 18, 2008
Like Botox for the preschool set...
Monday, right after posting my little list of miracles, KayTar woke up with a nasty cough and trouble breathing. What cold is complete with a little asthmatic bronchial involvement? I kept her home Monday because I couldn't control the cough even with the cough suppressant and her inhaler. Tuesday she seemed a bit better, so we went to therapy and school. Yesterday, she spiked a fever. The pediatrician wanted to see her, so we went in. After talking the pediatrician's ear off (she loves a captive audience), she was given a mostly clean bill of health. Clear lungs, ears, throat. Just remnants of the nasty cold.
The rest of the evening was fairly normal. Dinner. KayTar's feed. Cough medication. Playing. BubTar's bath. Same old, same old. Josh went out to run an errand and on his way back his picked up treats from Dairy Queen. I had a cookie dough Blizzard, but it was way too doughy for me and I only ate a few bites of it. KayTar was interested in it, so I gave her a few bites of the ice cream portion. A little while later, Josh, KayTar, and I were all in the bedroom. I was about to pull her up onto the bed to cuddle with us when she gagged once. Then she vomited. Projectile vomited, EVERYWHERE. We waited for her to finish, then stripped her down. I dunked her in the tub, Josh cleaned the mess. I dosed her with Zofran. (I actually thought maybe the puking was a sign that maybe she had a GI bug which was causing the new-onset fever) We jammied her and tucked her into bed with us to watch TV. I looked over and saw her rubbing her lip and got her some Chapstick (the same kind she's been using for months now) and handed it to her. She put it on and handed it back. I noticed she was still messing with her lip. Then she sat up and I saw it.
I sent the pediatrician a quick email. I wanted to make sure I could give Benadryl in conjunction with the meds she had already taken (dextromethorphan, Zofran), but it was late and she understandably didn't answer. I found a drug interaction checker online and put her meds in and got the virtual green light. It was still swelling, so I went ahead and gave it. Then I waited. About an hour later, her top lip swelled up, too!
Then, I was freaked out. I'd given Benadryl and she was still swelling up and it was QUITE close to her airway. I kept making her show me her tongue to make sure it wasn't swelling, but after she fell asleep, I couldn't check it any longer. I called the pediatrician's on call service. They tried to wake the nurse and couldn't. They connected me to a different nurse instead. She wasn't very helpful. She told me exactly what I was already thinking. We could stay put, wait it out, and possibly get into a bad position if the swelling affected her airway...or we could go in, possibly unnecessarily, and be in the ER for hours. After hemming and hawing, I decided to go in. I usually try to stay home at all costs, but this has never happened and I was too concerned about her airway to get any sleep anyway. I sent the pediatrician another email to let her know we were going to go in as I was getting ready and she replied. (Yes, my pediatrician is awesome and returns emails at 2 in the morning.) She said we could stay home, give more Benadryl in a little while, and if she wasn't actively swelling and her airway was okay, I could get some rest. If the swelling didn't stop progressing, we needed to go in.
After the Benadryl, I watched her for a bit and the swelling didn't seem to be increasing, so I tucked her in with me. (Sorry Josh, back to the land of fairies and flowers for you, sir.) I checked her periodically through the night and she made it through just fine. This morning there is some residual swelling, but not like last night.
The only new thing she was exposed to yesterday was the Blizzard from Dairy Queen, so that must have triggered it. Maybe the vomiting was actually the beginning of the allergic reaction, rather than a separate illness-related event. Maybe the Blizzard had peanut traces in it that she reacted to, though, she's never reacted to peanuts/peanut butter before. I really have no idea, but I definitely do not want to expose her to whatever caused it again. The pediatrician wants to test her for a peanut allergy, but in the meantime we will steer clear just in case and keep the Benadryl on hand. That is not an experience I want to duplicate!
Angelina Jolie called, she wants her lips back.
The rest of the evening was fairly normal. Dinner. KayTar's feed. Cough medication. Playing. BubTar's bath. Same old, same old. Josh went out to run an errand and on his way back his picked up treats from Dairy Queen. I had a cookie dough Blizzard, but it was way too doughy for me and I only ate a few bites of it. KayTar was interested in it, so I gave her a few bites of the ice cream portion. A little while later, Josh, KayTar, and I were all in the bedroom. I was about to pull her up onto the bed to cuddle with us when she gagged once. Then she vomited. Projectile vomited, EVERYWHERE. We waited for her to finish, then stripped her down. I dunked her in the tub, Josh cleaned the mess. I dosed her with Zofran. (I actually thought maybe the puking was a sign that maybe she had a GI bug which was causing the new-onset fever) We jammied her and tucked her into bed with us to watch TV. I looked over and saw her rubbing her lip and got her some Chapstick (the same kind she's been using for months now) and handed it to her. She put it on and handed it back. I noticed she was still messing with her lip. Then she sat up and I saw it.
I sent the pediatrician a quick email. I wanted to make sure I could give Benadryl in conjunction with the meds she had already taken (dextromethorphan, Zofran), but it was late and she understandably didn't answer. I found a drug interaction checker online and put her meds in and got the virtual green light. It was still swelling, so I went ahead and gave it. Then I waited. About an hour later, her top lip swelled up, too!
Then, I was freaked out. I'd given Benadryl and she was still swelling up and it was QUITE close to her airway. I kept making her show me her tongue to make sure it wasn't swelling, but after she fell asleep, I couldn't check it any longer. I called the pediatrician's on call service. They tried to wake the nurse and couldn't. They connected me to a different nurse instead. She wasn't very helpful. She told me exactly what I was already thinking. We could stay put, wait it out, and possibly get into a bad position if the swelling affected her airway...or we could go in, possibly unnecessarily, and be in the ER for hours. After hemming and hawing, I decided to go in. I usually try to stay home at all costs, but this has never happened and I was too concerned about her airway to get any sleep anyway. I sent the pediatrician another email to let her know we were going to go in as I was getting ready and she replied. (Yes, my pediatrician is awesome and returns emails at 2 in the morning.) She said we could stay home, give more Benadryl in a little while, and if she wasn't actively swelling and her airway was okay, I could get some rest. If the swelling didn't stop progressing, we needed to go in.
After the Benadryl, I watched her for a bit and the swelling didn't seem to be increasing, so I tucked her in with me. (Sorry Josh, back to the land of fairies and flowers for you, sir.) I checked her periodically through the night and she made it through just fine. This morning there is some residual swelling, but not like last night.
The only new thing she was exposed to yesterday was the Blizzard from Dairy Queen, so that must have triggered it. Maybe the vomiting was actually the beginning of the allergic reaction, rather than a separate illness-related event. Maybe the Blizzard had peanut traces in it that she reacted to, though, she's never reacted to peanuts/peanut butter before. I really have no idea, but I definitely do not want to expose her to whatever caused it again. The pediatrician wants to test her for a peanut allergy, but in the meantime we will steer clear just in case and keep the Benadryl on hand. That is not an experience I want to duplicate!
Monday, December 15, 2008
10 Small Miracles
1. The kids will not lose insurance coverage until January 31st at the earliest. (if Josh's boss is agreeable, or if I can find a job with good benefits in that time frame, they won't lose it at all.)
2. An angel sent me a gift in the mail this weekend that made a lot of things possible for our Christmas that would not otherwise be so. It was one of those moments that knocks you flat on the floor by how thoughtful and kind people can be and makes you believe in Santa all over again.
3. My husband slept in my bed last night. Oh, yes he did. Unfortunately, all we did was sleep due to the number of cold and decongestant medications we had ingested for our shared head cold.
4. My semester is over. I survived what was definitely my most challenging semester academically and personally thus far.
5. IT SNOWED LAST WEEK! REAL SNOW! (seems impossible, as I wore a tank top yesterday)
6. I made an A on my Microbiology final. (that is an A+ to you Canadians with your crazy grading scale) I haven't gotten my other grade yet.
7. KayTar got sick last week and it was a totally NORMAL kid illness. The first night was rough, but she only missed 1 day of school and it never escalated!
8. The granulation tissue is shrinking! (Josh calls it "The Dude" because he is terrible with medical terminology. He kept making up fancy words when he would ask about it, so finally he just went with "The Dude" as in, "How is The Dude looking today?")
9. KayTar ate CHEESE! She snuck into the fridge and snitched some shredded Italian cheese. She has never, ever eaten cheese. She told me, "I ate cheese! It was delicious!" I called Josh to tell him and KayTar overheard me talking about it and gave me this spastic wink and a big thumbs up. Adorable.
10. Josh and I went on a DATE this weekend. A date!
2. An angel sent me a gift in the mail this weekend that made a lot of things possible for our Christmas that would not otherwise be so. It was one of those moments that knocks you flat on the floor by how thoughtful and kind people can be and makes you believe in Santa all over again.
3. My husband slept in my bed last night. Oh, yes he did. Unfortunately, all we did was sleep due to the number of cold and decongestant medications we had ingested for our shared head cold.
4. My semester is over. I survived what was definitely my most challenging semester academically and personally thus far.
5. IT SNOWED LAST WEEK! REAL SNOW! (seems impossible, as I wore a tank top yesterday)
6. I made an A on my Microbiology final. (that is an A+ to you Canadians with your crazy grading scale) I haven't gotten my other grade yet.
7. KayTar got sick last week and it was a totally NORMAL kid illness. The first night was rough, but she only missed 1 day of school and it never escalated!
8. The granulation tissue is shrinking! (Josh calls it "The Dude" because he is terrible with medical terminology. He kept making up fancy words when he would ask about it, so finally he just went with "The Dude" as in, "How is The Dude looking today?")
9. KayTar ate CHEESE! She snuck into the fridge and snitched some shredded Italian cheese. She has never, ever eaten cheese. She told me, "I ate cheese! It was delicious!" I called Josh to tell him and KayTar overheard me talking about it and gave me this spastic wink and a big thumbs up. Adorable.
10. Josh and I went on a DATE this weekend. A date!
Thursday, December 11, 2008
REAL SNOW!
Yes, it totally deserves all caps.
First, I was excited about this....
Oh, look! Snow! On the ground! How miraculous!
Then I drove to meet Julie for dinner (with the windows down, so as to fully enjoy the snow). After dinner, I had to wipe nearly an inch of snow from my car windows and arrived home to find this...
So I immediately did this...
Then Josh and I did this...
Then Josh made a giant snowball...
It was up past my shoes!
I've lived in Texas for 21 years now. It snowed once when I was in 5th grade, but it looked more like that first photo at the top. Then it snowed in 2004, but I don't even think it was a full inch. This was miraculous. It may never snow like this again here, but it sure was fun!
I can look out my window this morning and still see the snow covering everything, though the snow on the grass is quickly melting. Our snowman has lost his head, but his body still stands. Josh's giant ball is still intact, too. For a few hours last night everything else, every problem we've got, was covered with a snowy white blanket and for a little while, ceased to exist. It was quite a gift.
First, I was excited about this....
Then I drove to meet Julie for dinner (with the windows down, so as to fully enjoy the snow). After dinner, I had to wipe nearly an inch of snow from my car windows and arrived home to find this...
So I immediately did this...
Then Josh and I did this...
Then Josh made a giant snowball...
It was up past my shoes!
I've lived in Texas for 21 years now. It snowed once when I was in 5th grade, but it looked more like that first photo at the top. Then it snowed in 2004, but I don't even think it was a full inch. This was miraculous. It may never snow like this again here, but it sure was fun!
I can look out my window this morning and still see the snow covering everything, though the snow on the grass is quickly melting. Our snowman has lost his head, but his body still stands. Josh's giant ball is still intact, too. For a few hours last night everything else, every problem we've got, was covered with a snowy white blanket and for a little while, ceased to exist. It was quite a gift.
Tuesday, December 09, 2008
Read all about it!
Special Interest
A man recently received an automatic 3% cost of living raise and it has thrown his family into a crisis situation. This small raise puts his family income roughly $20.54 above the SCHIP income guideline for his state. His daughter is uninsurable by private insurance standards due to multiple health conditions, and the family had exhausted all options before working to get their children enrolled in the SCHIP program. His wife works with the Children's Defense Fund, sharing their story in hopes that people will listen and see the need for changes within our state and national children's insurance programs. One of the most sought after changes is a buy-in program, so that families above the income guideline but unable to financially or medically qualify for private insurance, have an option. If this legislation goes through in the next session, she will feel satisfied knowing no other families will have to experience what hers has had to experience, not once, but twice, this year. The family has not lost their coverage yet, and are currently hoping for a Christmas miracle as the man speaks with his boss once again about the financial aspect of the problem. The first time the man requested a pay cut, he was ignored despite explaining the tenuous at best situation of his daughter and her medical needs. The second time he was told no. We all wonder, can they be so cold hearted as to deny him a third time, especially around the holidays? We wait with bated breath to find out.
Health
A young girl named KayTar had multiple surgeries in early November. Her recovery was easy despite persistent antibiotic-induced diarrhea, but the week of Thanksgiving, she developed a MRSA infection at her biopsy site. MRSA, or methicillin resistant staphylococcus aureus, is quite aggressive and had her parents wondering if they might be spending the holiday in the hospital. Thankfully, the oral antibiotics turned the tide just in time and the family escaped such a fate. Late last week, she began to develop granulation tissue around her stoma site. Granulation tissue is fibrous connective tissue that develops outside of the body, in an attempt to close a wound the body feels should not be there, such as a stoma from a g-button. Friday it was barely visible and by Sunday night, it was almost interfering with the ability to close the button effectively. This is being treated with a round of topical steroids which will hopefully heal it nicely. If not, it may be treated by chemical cautery with silver nitrate. Yesterday, for the first time since her surgery, the young girl has fallen ill. This morning her first words were reported to be, "I fink I'm going to throw up." Her parents are interested to find out if this recent run of health can be attributed to a successful surgery or if it is due to the near nonstop antibiotics the girl has been on since her surgeries a little over a month ago. Only time will tell, but something tells me this might be the first of the many infections she will experience throughout cold and flu season.
Food
A hunter recently brought home his conquest and decided to make jerky. He slaved over the dehydrator all day long, just waiting for a taste of his delicious trophy. Evening came and it was finally finished. He put it into a ziploc bag and left it on the kitchen counter to cool. The hunter then laid down on the sofa and quickly fell asleep. Hours later, he awoke. He could not find the jerky anywhere. He inquired of his son, "Where is the jerky?" He claimed, "On the counter, I only took one piece!" The man could not find the bag of jerky, but this is typical. The hunter might be able to stake out animals, but he is wholly unable to find things in his native environment. His wife sighed with exasperation. "I'll find it." She had to look no farther than where she stood, though. On the floor was an empty ziploc bag, with a small hole torn in it. "I found it. It is on the floor." Realization dawned on the hunter's face, "Nooooo. Nononononono! CAT! DOG! NOOOO!" The delicacy of his handiwork, stolen and eaten by a cat and dog who understand the true power of teamwork. The hunter mourned his great loss and can still be heard mumbling under his breath, "Stupid cat. Dang dog." many times each day.
Education
We attempted to interview a local college student about her upcoming finals, but she just stared at us with her crazy, twitching, exhausted eyes and handed us this photo before stumbling towards the nearest coffee shop. On the back she had scrawled, "And this is only ONE of the stacks." That says it all, doesn't it?
A man recently received an automatic 3% cost of living raise and it has thrown his family into a crisis situation. This small raise puts his family income roughly $20.54 above the SCHIP income guideline for his state. His daughter is uninsurable by private insurance standards due to multiple health conditions, and the family had exhausted all options before working to get their children enrolled in the SCHIP program. His wife works with the Children's Defense Fund, sharing their story in hopes that people will listen and see the need for changes within our state and national children's insurance programs. One of the most sought after changes is a buy-in program, so that families above the income guideline but unable to financially or medically qualify for private insurance, have an option. If this legislation goes through in the next session, she will feel satisfied knowing no other families will have to experience what hers has had to experience, not once, but twice, this year. The family has not lost their coverage yet, and are currently hoping for a Christmas miracle as the man speaks with his boss once again about the financial aspect of the problem. The first time the man requested a pay cut, he was ignored despite explaining the tenuous at best situation of his daughter and her medical needs. The second time he was told no. We all wonder, can they be so cold hearted as to deny him a third time, especially around the holidays? We wait with bated breath to find out.
Health
A young girl named KayTar had multiple surgeries in early November. Her recovery was easy despite persistent antibiotic-induced diarrhea, but the week of Thanksgiving, she developed a MRSA infection at her biopsy site. MRSA, or methicillin resistant staphylococcus aureus, is quite aggressive and had her parents wondering if they might be spending the holiday in the hospital. Thankfully, the oral antibiotics turned the tide just in time and the family escaped such a fate. Late last week, she began to develop granulation tissue around her stoma site. Granulation tissue is fibrous connective tissue that develops outside of the body, in an attempt to close a wound the body feels should not be there, such as a stoma from a g-button. Friday it was barely visible and by Sunday night, it was almost interfering with the ability to close the button effectively. This is being treated with a round of topical steroids which will hopefully heal it nicely. If not, it may be treated by chemical cautery with silver nitrate. Yesterday, for the first time since her surgery, the young girl has fallen ill. This morning her first words were reported to be, "I fink I'm going to throw up." Her parents are interested to find out if this recent run of health can be attributed to a successful surgery or if it is due to the near nonstop antibiotics the girl has been on since her surgeries a little over a month ago. Only time will tell, but something tells me this might be the first of the many infections she will experience throughout cold and flu season.
Food
A hunter recently brought home his conquest and decided to make jerky. He slaved over the dehydrator all day long, just waiting for a taste of his delicious trophy. Evening came and it was finally finished. He put it into a ziploc bag and left it on the kitchen counter to cool. The hunter then laid down on the sofa and quickly fell asleep. Hours later, he awoke. He could not find the jerky anywhere. He inquired of his son, "Where is the jerky?" He claimed, "On the counter, I only took one piece!" The man could not find the bag of jerky, but this is typical. The hunter might be able to stake out animals, but he is wholly unable to find things in his native environment. His wife sighed with exasperation. "I'll find it." She had to look no farther than where she stood, though. On the floor was an empty ziploc bag, with a small hole torn in it. "I found it. It is on the floor." Realization dawned on the hunter's face, "Nooooo. Nononononono! CAT! DOG! NOOOO!" The delicacy of his handiwork, stolen and eaten by a cat and dog who understand the true power of teamwork. The hunter mourned his great loss and can still be heard mumbling under his breath, "Stupid cat. Dang dog." many times each day.
Education
We attempted to interview a local college student about her upcoming finals, but she just stared at us with her crazy, twitching, exhausted eyes and handed us this photo before stumbling towards the nearest coffee shop. On the back she had scrawled, "And this is only ONE of the stacks." That says it all, doesn't it?
Monday, December 08, 2008
When hell freezes over...
Alternately titled, "When the Blessed Machines Bring Snow to Poor, Deprived Southern Children"
Everything is bigger in Texas (except snowmen).
PS: I'll write up The Insurance Saga, Part Deux in a couple of days. I have finals today and tomorrow so until then, enjoy these photos of wholly delighted children.
PS: I'll write up The Insurance Saga, Part Deux in a couple of days. I have finals today and tomorrow so until then, enjoy these photos of wholly delighted children.
Saturday, December 06, 2008
With/Without
The cost of KayTar's medications with insurance coverage:
The cost of KayTar's medications without insurance coverage:
Says it all, doesn't it? (except for the doctor's visits, feeding supplies, Pediasure, therapies, occasional tests and hospitalizations, the chance that her tube pops out and we need a new one immediately....well, you get the idea...)
PS: If you are new to this portion of our story, clicking the insurance label at the bottom of this post will fill you in on the rest.
****
Funny story, I got an email from someone at the CDF yesterday asking about the kid's losing their coverage. Do you know how they found out? THE BLOG! They are brainstorming about solutions, but in the meantime, we've stocked up on KayTar's medications and are getting ready for what seems to be inevitable. We'll make due, just like last time, but I really wish we weren't in this position, especially right before the holidays.
Zofran (generic).............$5.00
Bactrim (generic)...........$5.00
Albuterol....................$20.00
Vusion.......................$20.00
Bactroban (generic).........$5.00
Total: $55.00
The cost of KayTar's medications without insurance coverage:
Zofran (generic).............$269.99
Bactrim (generic).............$17.99
Albuterol.......................$36.99
Vusion.........................$251.99
Bactroban (generic)..........$44.99
Total: $621.95
Says it all, doesn't it? (except for the doctor's visits, feeding supplies, Pediasure, therapies, occasional tests and hospitalizations, the chance that her tube pops out and we need a new one immediately....well, you get the idea...)
PS: If you are new to this portion of our story, clicking the insurance label at the bottom of this post will fill you in on the rest.
****
Funny story, I got an email from someone at the CDF yesterday asking about the kid's losing their coverage. Do you know how they found out? THE BLOG! They are brainstorming about solutions, but in the meantime, we've stocked up on KayTar's medications and are getting ready for what seems to be inevitable. We'll make due, just like last time, but I really wish we weren't in this position, especially right before the holidays.
Thursday, December 04, 2008
Heavy.
I've had this weight on my chest for a week now.
Pressing down,
Squishing my internal organs,
Making it nearly impossible to think of anything else.
Though, the full weight of it was not yet upon me, one silvery strand of hope kept it from crushing me completely. Yesterday, the strand was cut.
I was crushed. I am crushed.
I cried. Tears prickling in my eyes only adds insult to injury. The world is out of my control and now my emotions are, too.
By the time Josh got home, the moment of weakness was a glimmer in a distant past, hours had gone by...but he saw it there. He saw me, only I wasn't quite myself.
"What is wrong?"
Everything. Everything seems wrong.
"You know what is wrong."
"What can I do?"
You could lift this crushing weight from my chest.
"Nothing. You and I both know there is nothing else to be done. We've tried it all before."
"Are you upset with me?"
Not unless you are calling the shots for the Universe, buddy.
"No, you have nothing to do with it. You know that."
He can't take this. He wants to be responsible, to take the brunt of my pain somehow. If he is responsible, then he can apologize, he can fix things.
I long to fix the situation and he longs to fix me.
He works at it all evening, at one point I stop him, "I can't just be happy to make you feel better. I know you want to fix this for me, but you can't. It is what it is and I can't get past it yet. I just can't."
He kisses me on the head and says, "Okay." But somehow, minutes later, I find myself smiling at him, laughing a little even. I crack a joke about this shitty hand we've been dealt, again, we both laugh.
He and I, in it together.
The weight suddenly spread between us, light enough for me to catch my breath again, at least for the moment.
****
The weight is this: It seems quite certain that KayTar is losing her insurance again. It is a long story, one that I won't give the details of until it is said and done. A small part of me believes there will be a reprieve this time, that we won't be living this all over again, but the logical part of me knows...there is no reprieve, and we are already living this again. Only this time, I think we really have exhausted all the options.
This little blip will probably be deleted shortly.
Pressing down,
Squishing my internal organs,
Making it nearly impossible to think of anything else.
Though, the full weight of it was not yet upon me, one silvery strand of hope kept it from crushing me completely. Yesterday, the strand was cut.
I was crushed. I am crushed.
I cried. Tears prickling in my eyes only adds insult to injury. The world is out of my control and now my emotions are, too.
By the time Josh got home, the moment of weakness was a glimmer in a distant past, hours had gone by...but he saw it there. He saw me, only I wasn't quite myself.
"What is wrong?"
Everything. Everything seems wrong.
"You know what is wrong."
"What can I do?"
You could lift this crushing weight from my chest.
"Nothing. You and I both know there is nothing else to be done. We've tried it all before."
"Are you upset with me?"
Not unless you are calling the shots for the Universe, buddy.
"No, you have nothing to do with it. You know that."
He can't take this. He wants to be responsible, to take the brunt of my pain somehow. If he is responsible, then he can apologize, he can fix things.
I long to fix the situation and he longs to fix me.
He works at it all evening, at one point I stop him, "I can't just be happy to make you feel better. I know you want to fix this for me, but you can't. It is what it is and I can't get past it yet. I just can't."
He kisses me on the head and says, "Okay." But somehow, minutes later, I find myself smiling at him, laughing a little even. I crack a joke about this shitty hand we've been dealt, again, we both laugh.
He and I, in it together.
The weight suddenly spread between us, light enough for me to catch my breath again, at least for the moment.
****
The weight is this: It seems quite certain that KayTar is losing her insurance again. It is a long story, one that I won't give the details of until it is said and done. A small part of me believes there will be a reprieve this time, that we won't be living this all over again, but the logical part of me knows...there is no reprieve, and we are already living this again. Only this time, I think we really have exhausted all the options.
This little blip will probably be deleted shortly.
Wednesday, December 03, 2008
Monday, December 01, 2008
Morning and night
In the morning she wakes before me, popping upright in bed. Her first words are, as always, "Where's Daddy? Where's BubTar?" It is the way she makes sense of the day. If Daddy and BubTar are home, it is the weekend or a rare vacation, if they are gone, it is a school day. I mumble in from my semi-conscious state, "Daddy is at work. BubTar is at school." She starts to whine, but I cushion the blow quickly by saying, "That means you get to go to school today, too! Won't that be fun?" Her tune changes, "Oh yes, that will be fun, I will get to see my friends and my teacher and every-fing! Let's get out of bed! Let's go now, Mommy, let's go." I beg her, "Please, let's just lay here for a minute, let Mommy's eyes open a little." She tosses herself back onto the pillow, "Okay, let's wait." She watches me closely, I imagine, because as soon as I pry one of my sleepy eyes open in a half-squint, she is cheering, "You're doing it, Mommy! You're doing it! You're opening your eyes! Now blink like THIS. YAY MOMMY!" Still squinting I reach over and pull her to me, she giggles all the way. I kiss her forehead and cheeks and she exclaims, "Do it again. Kiss me on my eyes! Kiss me on my chin! Kiss me faster! You're so silly, Mommy." She laughs and I smile a sleepy smile. She collapses next to me and breathe her in and close my eyes. She senses my relaxation and prods, "Are your eyes open? Are we ready to go? Let's go, Mommy!" I sit up with a growl and tickle her. She giggles and wiggles. Finally, I pry myself from the warmth of our big bed and we start our day together.
****
At night I lay with her in bed. She says, "Pull me over there, Mommy, closer!" I grab her pillow and pull it closer to my pillow, so close that the edge is tucked beneath my own. She giggles. "Now hug me!" I wrap my arm around her and she nuzzles her forehead against mine. I brush her hair back and kiss her forehead, her eyelids. I whisper, "I love you. You're my best girl." I run my finger down her little nose. She breathes out, "You're my best mommy." She sighs loudly and wiggles her little body one last time. I lie there in the quiet, listening to the rhythm of her breathing as it slows. I watch her eyelids flutter. I smooth her hair back. I trace the lines of her face with my eyes, committing her silhouette to memory. I kiss her little knuckles, still clenching her blankey. I watch for a response, a reflexive movement, but there is none. I roll away from her slowly, tentatively, I sit up on the edge of the bed, then I stand and scurry swiftly and silently from the room.
****
At night I lay with her in bed. She says, "Pull me over there, Mommy, closer!" I grab her pillow and pull it closer to my pillow, so close that the edge is tucked beneath my own. She giggles. "Now hug me!" I wrap my arm around her and she nuzzles her forehead against mine. I brush her hair back and kiss her forehead, her eyelids. I whisper, "I love you. You're my best girl." I run my finger down her little nose. She breathes out, "You're my best mommy." She sighs loudly and wiggles her little body one last time. I lie there in the quiet, listening to the rhythm of her breathing as it slows. I watch her eyelids flutter. I smooth her hair back. I trace the lines of her face with my eyes, committing her silhouette to memory. I kiss her little knuckles, still clenching her blankey. I watch for a response, a reflexive movement, but there is none. I roll away from her slowly, tentatively, I sit up on the edge of the bed, then I stand and scurry swiftly and silently from the room.
Sunday, November 30, 2008
In retrospect...
I started out the month tentatively committing to NaBloPoMo, while preparing for KayTar's surgery. 3 days to the big event.
I mourned the day her bottle would be left behind, a day that was then in the future and is now in the past. I love this post.
I discussed hospital preparations and posted my very favorite photo of her belly, pre-tube.
As its last act in office, the unblemished belly reminded everyone to vote.
KayTar had surgery. It was a success. Obama won the election. That was success, too.
She smiled her first post-op smile and I showed off our giant hospital room.
The new belly made its blog debut, and KayTar won her very first Barbie in the hospital craft contest.
A blog reader made KayTar a tutu and brought it to her in the hospital. We got to come home!
I worried that BubTar's GI bug would infect the post-op princess, though, luckily we escaped that fate.
KayTar made the saddest little self-portrait ever.
I did a meme, featuring BubTar.
Josh and I enjoyed our election date-bet. Mmmm, Olive Garden.
KayTar showed off her tube via video post.
I fed her while she was asleep for the first time and the heavens opens and angels sang.
I started to feel like a human being again. A happy one at that.
By the tenth day post-op, KayTar was doing wonderfully.
I rediscovered the joy of my camera.
I posted what is possibly my very favorite photo of BubTar ever.
I was completely perplexed by KayTar's feeding schedule.
I tried to give everyone a peek into what it is like to be a kiddo with a feeding disorder, or a parent of a child with a feeding disorder.
I posted more photos.
I talked a lot about puke. Classic mommyblogging.
Photo.
I missed sharing a bed with my husband. I am still missing sharing a bed with my husband.
I wrote about secret writing.
I dreamed that I gave birth to a baby. It was the kind of dream that packs a punch.
I wrote about studying. KayTar's biopsy site became infected.
I took a photo of the Throne of Blogging.
We had a happy Thanksgiving, in spite of being on ER watch.
I reposted one of my favorite posts.
I discussed not discussing the things I cannot discuss right now.
And today, I finished NaBloPoMo. WHEW!
I mourned the day her bottle would be left behind, a day that was then in the future and is now in the past. I love this post.
I discussed hospital preparations and posted my very favorite photo of her belly, pre-tube.
As its last act in office, the unblemished belly reminded everyone to vote.
KayTar had surgery. It was a success. Obama won the election. That was success, too.
She smiled her first post-op smile and I showed off our giant hospital room.
The new belly made its blog debut, and KayTar won her very first Barbie in the hospital craft contest.
A blog reader made KayTar a tutu and brought it to her in the hospital. We got to come home!
I worried that BubTar's GI bug would infect the post-op princess, though, luckily we escaped that fate.
KayTar made the saddest little self-portrait ever.
I did a meme, featuring BubTar.
Josh and I enjoyed our election date-bet. Mmmm, Olive Garden.
KayTar showed off her tube via video post.
I fed her while she was asleep for the first time and the heavens opens and angels sang.
I started to feel like a human being again. A happy one at that.
By the tenth day post-op, KayTar was doing wonderfully.
I rediscovered the joy of my camera.
I posted what is possibly my very favorite photo of BubTar ever.
I was completely perplexed by KayTar's feeding schedule.
I tried to give everyone a peek into what it is like to be a kiddo with a feeding disorder, or a parent of a child with a feeding disorder.
I posted more photos.
I talked a lot about puke. Classic mommyblogging.
Photo.
I missed sharing a bed with my husband. I am still missing sharing a bed with my husband.
I wrote about secret writing.
I dreamed that I gave birth to a baby. It was the kind of dream that packs a punch.
I wrote about studying. KayTar's biopsy site became infected.
I took a photo of the Throne of Blogging.
We had a happy Thanksgiving, in spite of being on ER watch.
I reposted one of my favorite posts.
I discussed not discussing the things I cannot discuss right now.
And today, I finished NaBloPoMo. WHEW!
Saturday, November 29, 2008
Oh, what a week.
I can't tell you about my week, I wish I could.
One story is not mine to tell. Though, if it were made into a TV show, I'd have a few lines...maybe make an appearance in a scene or two. This story is actually a story I've seen played out on television more than once. It's the sort of situation that makes me wonder if somehow I've slipped into a parallel universe or wandered onto a sound stage somewhere without realizing it.
The second story is mine and it will be told, but this isn't the right time. I wish I could write about it, I long to pull the thoughts from my mind and store them here for a while, but I can't. Not yet.
It has been the kind of week that leaves you bursting with thoughts, yet speechless. Constipation of the mind. The thoughts churn through my mind, the pressure building...insult added to injury. The kind of week where I find myself scrutinizing my backside in the mirror, certain that eventually I will be able to see the cosmic bullseye that must be painted back there. It has been a week to remember, that's for sure.
I wish I could offer something more than this, but my tongue is firmly tied and my mind can't quite focus on anything other than what I simply cannot say. Instead--HEY LOOK! CUTE KIDS!
Saturday morning cartoons with the 'Tars. He is such a good brother.
One story is not mine to tell. Though, if it were made into a TV show, I'd have a few lines...maybe make an appearance in a scene or two. This story is actually a story I've seen played out on television more than once. It's the sort of situation that makes me wonder if somehow I've slipped into a parallel universe or wandered onto a sound stage somewhere without realizing it.
The second story is mine and it will be told, but this isn't the right time. I wish I could write about it, I long to pull the thoughts from my mind and store them here for a while, but I can't. Not yet.
It has been the kind of week that leaves you bursting with thoughts, yet speechless. Constipation of the mind. The thoughts churn through my mind, the pressure building...insult added to injury. The kind of week where I find myself scrutinizing my backside in the mirror, certain that eventually I will be able to see the cosmic bullseye that must be painted back there. It has been a week to remember, that's for sure.
I wish I could offer something more than this, but my tongue is firmly tied and my mind can't quite focus on anything other than what I simply cannot say. Instead--HEY LOOK! CUTE KIDS!
Friday, November 28, 2008
Back here again.
She longs to speak, but cannot bring herself to do so.
The silent minutes and hours and days roll by and she remains quiet because there is only one thing she can think of, speak of...this secret...but she will not give life or breath to it, not here, not when she is exposed and bare.
She tucks herself into bed at night, wishing sleep would come and she writes imaginary words on her ceiling and eyelids when it doesn't find her. She plucks words from the trees of her mind, turning them over in her hands, testing their weight, holding them close or discarding them, thinking of how sweet it would be to speak them aloud. The energy of it all buzzes inside of her and she rolls over, trying to quiet it and soothe it away. But sleep still dances around her like a hummingbird never quite still enough to land. The clock blinks and the tree boughs grow heavier and heavier with words ripe for harvesting.
She tries to appease herself by speaking of it in vagaries and shadows, never really saying what longs to be said, never succumbing to the birth pangs of the truth coursing through her, but instead she says something that amounts to nothing, hoping that this small offering is enough to make it through the night.
This is a repost from January, but when I sat down to write today, this post was all I could think of. This post and all of the many, many things I cannot say.
PS: Please, go visit my friend, Bennie. His son stopped breathing today and is currently in the PICU. They need all the support they can get.
The silent minutes and hours and days roll by and she remains quiet because there is only one thing she can think of, speak of...this secret...but she will not give life or breath to it, not here, not when she is exposed and bare.
She tucks herself into bed at night, wishing sleep would come and she writes imaginary words on her ceiling and eyelids when it doesn't find her. She plucks words from the trees of her mind, turning them over in her hands, testing their weight, holding them close or discarding them, thinking of how sweet it would be to speak them aloud. The energy of it all buzzes inside of her and she rolls over, trying to quiet it and soothe it away. But sleep still dances around her like a hummingbird never quite still enough to land. The clock blinks and the tree boughs grow heavier and heavier with words ripe for harvesting.
She tries to appease herself by speaking of it in vagaries and shadows, never really saying what longs to be said, never succumbing to the birth pangs of the truth coursing through her, but instead she says something that amounts to nothing, hoping that this small offering is enough to make it through the night.
This is a repost from January, but when I sat down to write today, this post was all I could think of. This post and all of the many, many things I cannot say.
PS: Please, go visit my friend, Bennie. His son stopped breathing today and is currently in the PICU. They need all the support they can get.
Thursday, November 27, 2008
Wednesday, November 26, 2008
This is where the magic happens, baby.
I stole this meme from In the Fast Lane. NaBloPoMo fodder, you know, desperate times and all of that.
Points of interest of this virtual tour of my workspace:
* The screen, which shows In the Fast Lane's blog and the photo of her workspace. Blog within a blog! Trippy!
* Coffee mug, filled with second cup of coffee for the day.
* Blue filing drawers: top drawer labeled "Medical", middle drawer labeled "School". bottom drawer labeled "Other"...all three are almost full with KayTar business.
* Binders on top of drawers: Larger binder is just a PORTION of KayTar's medical file, smaller binder is full of therapy reports.
* Index cards, that stack is ONLY my most recent Microbiology set.
* Planner, where all details of life are stored.
I'll tag Motherbumper (in NaBloPoMo solidarity), AJ, Amy, and Slouchy.
PS: The verdict is yes, KayTar does have a staph infection at her incision site, 1 part small abscess, 1 part cellulitis. I would include a photo, but most people don't really enjoy that sort of thing. Bactrim twice a day for 7 days, plus topical Bactroban and hopefully it will clear up. As the pediatrician said, "Well, we almost escaped this unscathed." Almost.
PPS: The cellulitis area more than doubled in size since our appointment this morning. We are watchfully waiting, but if it doesn't stop expanding by 11am tomorrow or if she spikes a fever, then we have to go to the ER for IV antibiotics. Of course.
If you are a blogger you now have a mission. As soon as you read this, drop everything, grab your camera and take pictures of where you blog from. NO CLEANING!!! THEN, tag some lucky ducks and spread the love.
Points of interest of this virtual tour of my workspace:
* The screen, which shows In the Fast Lane's blog and the photo of her workspace. Blog within a blog! Trippy!
* Coffee mug, filled with second cup of coffee for the day.
* Blue filing drawers: top drawer labeled "Medical", middle drawer labeled "School". bottom drawer labeled "Other"...all three are almost full with KayTar business.
* Binders on top of drawers: Larger binder is just a PORTION of KayTar's medical file, smaller binder is full of therapy reports.
* Index cards, that stack is ONLY my most recent Microbiology set.
* Planner, where all details of life are stored.
I'll tag Motherbumper (in NaBloPoMo solidarity), AJ, Amy, and Slouchy.
PS: The verdict is yes, KayTar does have a staph infection at her incision site, 1 part small abscess, 1 part cellulitis. I would include a photo, but most people don't really enjoy that sort of thing. Bactrim twice a day for 7 days, plus topical Bactroban and hopefully it will clear up. As the pediatrician said, "Well, we almost escaped this unscathed." Almost.
PPS: The cellulitis area more than doubled in size since our appointment this morning. We are watchfully waiting, but if it doesn't stop expanding by 11am tomorrow or if she spikes a fever, then we have to go to the ER for IV antibiotics. Of course.
Tuesday, November 25, 2008
Stages of Studying
Stage 1: Excitement.
Ooooh, new information! I love all this new information! This is the stage where I bother Josh incessantly with copious information regarding whatever subject I am studying.
Stage 2: Mild panic.
This stage varies somewhat, but usually the reaction is something like, "6 PAGES?! HOW WILL I EVER LEARN THIS IN TIME?!" But on my most recent Microbiology exam review, I thought, "Only 1 and 1/4 pages? HOW EASY!" Then I got to the last item on the list, it said:
DUDE.
Stage 3: Competence.
This is when I make my beautiful, brightly colored index cards. For the first exam this week (Microbiology) I wrote well over 100 cards. For the second exam (A&P II) I probably had just under 100 cards. Then I read the cards frontwards and backwards until I can no longer process the words, bringing us to...
Stage 4: DESPAIR!
It goes something like this, "I'll never learn this in time! NEVER! I can't remember one more thing! I've wasted hours studying because when I take the test, I'm not going to remember anything!" Wah, wah, wah. I give up, play Guitar Hero like a petulant child, and then go to class for the exam (where I find the brain power to review the cards one last time).
Stage 5: Relief.
The test is OVER! Hooray! I always have a skip in my step after the test is over. Last night I was felt sure I'd made over a 90% and tonight, I felt pretty sure I'd made either a 98% or 100%. We'll see about that tomorrow.
Stage 6: Elation!
Like when I checked my Microbiology grade tonight and discovered I made a 97 on that exam. Take that virulence factors! Take that agammaglobulinemia! Take that staphylococcus and the 7 notecards dedicated just to you!
PS: Speaking of staphylococcus, KayTar's biopsy site is infected and so we are headed to the pediatrician tomorrow morning. Oh life, you just think you are SO entertaining, don't you?
Ooooh, new information! I love all this new information! This is the stage where I bother Josh incessantly with copious information regarding whatever subject I am studying.
Stage 2: Mild panic.
This stage varies somewhat, but usually the reaction is something like, "6 PAGES?! HOW WILL I EVER LEARN THIS IN TIME?!" But on my most recent Microbiology exam review, I thought, "Only 1 and 1/4 pages? HOW EASY!" Then I got to the last item on the list, it said:
For each germ know the following when applicable: name of the disease; virulence factors (enzyme, toxin, antigen, fimbriae, capsule, etc); stages of the disease; reservoir/origin; tissue/organ system affected; if the germ is fastidious or not.
DUDE.
Stage 3: Competence.
This is when I make my beautiful, brightly colored index cards. For the first exam this week (Microbiology) I wrote well over 100 cards. For the second exam (A&P II) I probably had just under 100 cards. Then I read the cards frontwards and backwards until I can no longer process the words, bringing us to...
Stage 4: DESPAIR!
It goes something like this, "I'll never learn this in time! NEVER! I can't remember one more thing! I've wasted hours studying because when I take the test, I'm not going to remember anything!" Wah, wah, wah. I give up, play Guitar Hero like a petulant child, and then go to class for the exam (where I find the brain power to review the cards one last time).
Stage 5: Relief.
The test is OVER! Hooray! I always have a skip in my step after the test is over. Last night I was felt sure I'd made over a 90% and tonight, I felt pretty sure I'd made either a 98% or 100%. We'll see about that tomorrow.
Stage 6: Elation!
Like when I checked my Microbiology grade tonight and discovered I made a 97 on that exam. Take that virulence factors! Take that agammaglobulinemia! Take that staphylococcus and the 7 notecards dedicated just to you!
PS: Speaking of staphylococcus, KayTar's biopsy site is infected and so we are headed to the pediatrician tomorrow morning. Oh life, you just think you are SO entertaining, don't you?
Sunday, November 23, 2008
Once upon a time...
I wrote tonight, deeply and skillfully. The post sits with my other drafts, it is highly unlikely that it will ever be published. It is the story of a young girl and a young boy, bumbling towards ecstasy for the first time. It made me smile and laugh, those poor awkward kids, all elbows and nerves. Now, though, the warm elixir of words seems to have run dry, every drip and drop used up in the writing of that post...that secret post that will never see the light of day.
It is NaBloPoMo, though, and write and publish, I must. I could hurry and write something passable, but instead I pose a question to you...do you ever write simply for yourself? Pour yourself into something that no eyes but your own will ever see? Is it contrary to your blogging nature? Do you feel that your words are wasted if they can't be shared?
Tonight was the first time in a long time I wrote with that intention. I knew as soon as I put words on the page it would likely be for me and only me. It was oddly satisfying to write for myself, though, the pride I felt in the way I weaved the words together made me long to share them. If I had written about anything else, I'd likely have posted it in the end, but, alas, the fear of making my first sexual experience accessible via Google outweighs the desire to share my writing. We all draw the line somewhere, and if I hadn't drawn it, a certain young boy turned husband and father of two just might have.
It is NaBloPoMo, though, and write and publish, I must. I could hurry and write something passable, but instead I pose a question to you...do you ever write simply for yourself? Pour yourself into something that no eyes but your own will ever see? Is it contrary to your blogging nature? Do you feel that your words are wasted if they can't be shared?
Tonight was the first time in a long time I wrote with that intention. I knew as soon as I put words on the page it would likely be for me and only me. It was oddly satisfying to write for myself, though, the pride I felt in the way I weaved the words together made me long to share them. If I had written about anything else, I'd likely have posted it in the end, but, alas, the fear of making my first sexual experience accessible via Google outweighs the desire to share my writing. We all draw the line somewhere, and if I hadn't drawn it, a certain young boy turned husband and father of two just might have.
Saturday, November 22, 2008
I haven't slept with my husband in 19 days.
KayTar used to be a great sleeper. A champion sleeper, in fact. She used to put herself to sleep in her own bed and stay there, peacefully, throughout the night. She used to be averse to cuddling at bedtime, even. During her 48 hour inpatient EEG last summer, she wanted me to lay with her as she fell asleep and it was a surprising and magnificent treat. I was allowed to cuddle with her, the heavens parted and the angels sang! She was big on personal space and routine, and sleeping any place other than her own bed or all alone were contrary to her established routines. Please note that this paragraph is largely in the past-tense. This post should be alternately titled, "How to Ruin Your Perfect Sleeper in a Few Easy Steps!"
It started months ago, just before her hospital stay this summer. We found her in her bed in the morning, covered with vomit. She hadn't cried out to notify us and must have been too tired to do so. This did not sit well with us. Dangerous. In the hospital, I witnessed this phenomenon, this still-sleeping vomit, and it bother me even more. She didn't wake up or sit up to vomit. I heard the noise and sprang into action (my clothing was an unfortunate causality of this action), but she didn't wake up for it, not for the puking, not for the cleaning, not for the bed switching. It was very, very unsettling, because as you all know, she has a habit of puking. She pukes when she has throat infections, when she has respiratory infections, when she has stomach viruses, when she has sinus infections, when she has episodes. She PUKES. Now we worry about it a bit more, puke plus an unconscious kiddo just seems like a recipe for disaster. When she is sick, she sleeps with me now (Josh goes to sleep in her room, usually). If she vomits in the middle of the night, at least one of us will be waking appropriately.
She came home from the hospital this summer, still under the weather, and was my bunk mate for a few more days. Once she moved back to her room, we had to lay with her at bedtime so she could sleep. Then she got sick again. Back to our bed. Then, back to her bed. She got sick AGAIN. Back to our bed. Then the hurricane happened. We roomed with her at the hotel, then at my parents' house for nearly two weeks. Then BubTar had to room with her, because of his broken window. Then she was sick yet again. Back to our bed. Then we finally, finally got her back into her own bed just before surgery. It was not easy, and she still ended up in our bed in the middle of the night quite a bit, but she was at least starting the night in her own bed.
Then she and I left for the hospital and that was the last time I've slept in the same bed with my husband. November 3rd. It made sense to keep her in our bed for recovery, narcotics plus three surgical sites needed nighttime supervision. It was a good decision. The problem is, well, it seems as though we will never-ever-ever get her back into her own bed. We bravely and optimistically put her to bed in her own bed one night with the promise that if she woke up, she could some to our bed. Two hours later, she was in our bed. Then, we made a second attempt. I mentioned two voluntary vomits in my previous post, the second was at the suggestion that she was going to be laying down in her own bed again that night, not ours. We stuck to our guns initially, she had to lay down in her own bed that night...but she worked VERY VERY hard at staying awake and at midnight, we brought her into our bed so we could get some sleep. She had school the next day, Josh had work. We haven't tried again yet. (We're a little afraid of the vomit, if I'm being honest...)
But I miss my husband. I miss laying in bed at night and watching TV or a movie with him. I miss arguing over what we're going to watch, for that matter, or whose turn it is to be in charge of fast forwarding the DVR. I miss rolling over next to him when I get cold in the night or when I'm spooked for no real reason. I miss putting my hand on his chest to feel his heartbeat when I can't fall asleep. I miss listening to his boring science shows as I fall asleep at night. I miss lazy back rubs and laying my head on his chest. I miss telling him the little things that pop into my head after the lights go out, "Today BubTar....", "Oh, KayTar's teacher said...", "The funniest thing happened in class tonight...". I even miss his advances, both the ones that are accepted and those that are denied. I miss being in convenient proximity to him. I miss the ease with which we could find each other in the night, his dark form always within reach.
We go in our separate directions all day, every day. He is at work, then I am at school. We brush past each other and in that moment, I pass the baton, briefing him on the day in nearly a single breath. Who needs a bath, who needs to eat, who needs medication, who has homework to do. Coworkers handing off a common file. But in the night, somehow the coworkers become friends, the friends become lovers. The demands of the day are suspended just long enough to allow us the freedom to breathe each other in deeply, to become we, who we once were, who we still are, who we one day might be. Simply, we.
That isn't to say we haven't been--AHEM--finding each other in the night...it just feels a bit like summer camp, rowing across the lake from the girls' bunk to steal moments with your lover in the night, hoping the counselors won't find you with their roaming flashlights. Except that I never went to summer camp or rowed a boat for that matter, and the counselors in the scenario are small, lightly sleeping children.
It started months ago, just before her hospital stay this summer. We found her in her bed in the morning, covered with vomit. She hadn't cried out to notify us and must have been too tired to do so. This did not sit well with us. Dangerous. In the hospital, I witnessed this phenomenon, this still-sleeping vomit, and it bother me even more. She didn't wake up or sit up to vomit. I heard the noise and sprang into action (my clothing was an unfortunate causality of this action), but she didn't wake up for it, not for the puking, not for the cleaning, not for the bed switching. It was very, very unsettling, because as you all know, she has a habit of puking. She pukes when she has throat infections, when she has respiratory infections, when she has stomach viruses, when she has sinus infections, when she has episodes. She PUKES. Now we worry about it a bit more, puke plus an unconscious kiddo just seems like a recipe for disaster. When she is sick, she sleeps with me now (Josh goes to sleep in her room, usually). If she vomits in the middle of the night, at least one of us will be waking appropriately.
She came home from the hospital this summer, still under the weather, and was my bunk mate for a few more days. Once she moved back to her room, we had to lay with her at bedtime so she could sleep. Then she got sick again. Back to our bed. Then, back to her bed. She got sick AGAIN. Back to our bed. Then the hurricane happened. We roomed with her at the hotel, then at my parents' house for nearly two weeks. Then BubTar had to room with her, because of his broken window. Then she was sick yet again. Back to our bed. Then we finally, finally got her back into her own bed just before surgery. It was not easy, and she still ended up in our bed in the middle of the night quite a bit, but she was at least starting the night in her own bed.
Then she and I left for the hospital and that was the last time I've slept in the same bed with my husband. November 3rd. It made sense to keep her in our bed for recovery, narcotics plus three surgical sites needed nighttime supervision. It was a good decision. The problem is, well, it seems as though we will never-ever-ever get her back into her own bed. We bravely and optimistically put her to bed in her own bed one night with the promise that if she woke up, she could some to our bed. Two hours later, she was in our bed. Then, we made a second attempt. I mentioned two voluntary vomits in my previous post, the second was at the suggestion that she was going to be laying down in her own bed again that night, not ours. We stuck to our guns initially, she had to lay down in her own bed that night...but she worked VERY VERY hard at staying awake and at midnight, we brought her into our bed so we could get some sleep. She had school the next day, Josh had work. We haven't tried again yet. (We're a little afraid of the vomit, if I'm being honest...)
But I miss my husband. I miss laying in bed at night and watching TV or a movie with him. I miss arguing over what we're going to watch, for that matter, or whose turn it is to be in charge of fast forwarding the DVR. I miss rolling over next to him when I get cold in the night or when I'm spooked for no real reason. I miss putting my hand on his chest to feel his heartbeat when I can't fall asleep. I miss listening to his boring science shows as I fall asleep at night. I miss lazy back rubs and laying my head on his chest. I miss telling him the little things that pop into my head after the lights go out, "Today BubTar....", "Oh, KayTar's teacher said...", "The funniest thing happened in class tonight...". I even miss his advances, both the ones that are accepted and those that are denied. I miss being in convenient proximity to him. I miss the ease with which we could find each other in the night, his dark form always within reach.
We go in our separate directions all day, every day. He is at work, then I am at school. We brush past each other and in that moment, I pass the baton, briefing him on the day in nearly a single breath. Who needs a bath, who needs to eat, who needs medication, who has homework to do. Coworkers handing off a common file. But in the night, somehow the coworkers become friends, the friends become lovers. The demands of the day are suspended just long enough to allow us the freedom to breathe each other in deeply, to become we, who we once were, who we still are, who we one day might be. Simply, we.
That isn't to say we haven't been--AHEM--finding each other in the night...it just feels a bit like summer camp, rowing across the lake from the girls' bunk to steal moments with your lover in the night, hoping the counselors won't find you with their roaming flashlights. Except that I never went to summer camp or rowed a boat for that matter, and the counselors in the scenario are small, lightly sleeping children.
Friday, November 21, 2008
Thursday, November 20, 2008
How often do normal kids puke anyway?
I've heard there are these children in existence who have only vomited a handful of times, some are said to have lived their whole lives without vomiting. I believe them to be mythical creatures, though, it is less depressing that way. BubTar is a healthy kind of kid and even he's vomited more times than I can count on my fingers and toes. And KayTar, well, she is in a different league altogether. She puked tonight actually. Josh said, "You threw up!" She said, "No Daddy, I PUKED." Throwing up is for novices, she's a professional. She is a puker. In the past two weeks, she has puked 4 times and she's healthy at the moment.
The first puke was a negative reaction to brushing her teeth with a different toothpaste than we normally use. Something about it was highly offensive to her delicate ladylike senses. Yuck. This one was really sad because it was in the early post-op days when she was still having a lot of throat and stomach pain and it hurt quite a bit to get sick.
The second and third pukes were voluntary. Oh yes, you read that correctly, voluntary...as in, she can contract her stomach muscles in such a way that in about a minute, she can produce satisfactory results, no gagging involved. This is a brand new skill, a skill we are not all that happy about. It is employed as a tactic to win an argument. As in, "KayTar, time to go to bed!" "But I don't want to go to bed! I want to play the laptop!" "Nope, sorry, it is bedtime." Silence and concentration, stomach contractions, then PUKE! Totally controlled. Totally voluntary. Totally irritating. How do you respond to that? How do you appropriately redirect or discipline when instead of throwing a fit, your child throws up? We are in such trouble.
The fourth puke was tonight. Josh, who is really skittish about this tube feeding business and is still afraid of hooking and unhooking her, was feeding her...he got to the end, flushed the line, and then she gagged and puked. A lot. There was a lot of puke. We aren't sure why. She had a few bites of ice cream shortly before her feed, maybe she was the tiniest bit overfull? She's starting to get congested and has some sinus drainage, maybe that made her oversensitive, it usually does. Maybe she just felt gaggy all of a sudden. Regardless, I think poor Josh has been traumatized. He is probably having nightmares right now of her stomach filling up like a balloon and bursting. Anyway, I asked her about it later.
Me: KayTar, how does your stomach feel?
K: Hmmm, too stomachey.
Me: How did your stomach feel when Daddy was feeding you?
K: Too burpy and gaggy.
Me: Did you feel full?
K: Yes.
Me: What does full feel like?
K: Full feels like hungry!
Suuuuuure it does, kid. We've known that she doesn't understand the sensation of hunger for a long time, but we didn't realize she didn't understand what it means to be full either. Makes sense, though. Now we know that if we tell her to tell us when she is full, her answer isn't exactly reliable. We learn something new every day!
The first puke was a negative reaction to brushing her teeth with a different toothpaste than we normally use. Something about it was highly offensive to her delicate ladylike senses. Yuck. This one was really sad because it was in the early post-op days when she was still having a lot of throat and stomach pain and it hurt quite a bit to get sick.
The second and third pukes were voluntary. Oh yes, you read that correctly, voluntary...as in, she can contract her stomach muscles in such a way that in about a minute, she can produce satisfactory results, no gagging involved. This is a brand new skill, a skill we are not all that happy about. It is employed as a tactic to win an argument. As in, "KayTar, time to go to bed!" "But I don't want to go to bed! I want to play the laptop!" "Nope, sorry, it is bedtime." Silence and concentration, stomach contractions, then PUKE! Totally controlled. Totally voluntary. Totally irritating. How do you respond to that? How do you appropriately redirect or discipline when instead of throwing a fit, your child throws up? We are in such trouble.
The fourth puke was tonight. Josh, who is really skittish about this tube feeding business and is still afraid of hooking and unhooking her, was feeding her...he got to the end, flushed the line, and then she gagged and puked. A lot. There was a lot of puke. We aren't sure why. She had a few bites of ice cream shortly before her feed, maybe she was the tiniest bit overfull? She's starting to get congested and has some sinus drainage, maybe that made her oversensitive, it usually does. Maybe she just felt gaggy all of a sudden. Regardless, I think poor Josh has been traumatized. He is probably having nightmares right now of her stomach filling up like a balloon and bursting. Anyway, I asked her about it later.
Me: KayTar, how does your stomach feel?
K: Hmmm, too stomachey.
Me: How did your stomach feel when Daddy was feeding you?
K: Too burpy and gaggy.
Me: Did you feel full?
K: Yes.
Me: What does full feel like?
K: Full feels like hungry!
Suuuuuure it does, kid. We've known that she doesn't understand the sensation of hunger for a long time, but we didn't realize she didn't understand what it means to be full either. Makes sense, though. Now we know that if we tell her to tell us when she is full, her answer isn't exactly reliable. We learn something new every day!
Wednesday, November 19, 2008
Tuesday, November 18, 2008
And the correct answer is...
"Kyla, just calm down and go with the flow already!"
TA DA! It was an easy one to figure out after all.
Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"
You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.
The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.
As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.
One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.
Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.
PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.
Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.
TA DA! It was an easy one to figure out after all.
Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"
You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.
The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.
As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.
One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.
Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.
PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.
Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.
Monday, November 17, 2008
Word Problem
Disclaimer: This is (mostly) rhetorical...unless you have some sort of epiphany, then by all means, bring it on!
KayTar needs to eat four times per day and intake a total of 32 ounces of Pediasure each day*. Her feeds should be as equally spaced as possible, to avoid overfilling or underfilling. While KayTar can eat while sleeping, either in the morning or at night, she cannot eat between the hours of 12-3pm or 5:30-9pm on Monday-Friday. Furthermore, she cannot eat between the hours of 7:30-9am on Tuesdays. At what times should KayTar eat?
Failed solutions to this problem:
The Saturday/Sunday solution of 10am, 2pm, 6pm, 10pm
9am, 1pm, 5pm, 9pm
7am, 11am, 3pm, 7pm
10am, 3pm, 7pm, 12am
8am, 12pm, 4pm, 8pm
And so on...
*She was having dizzy spells last week. Hello there hypoglycemia, nice to meet you! While she is used to drinking only 3 Pediasures per day, on good days, she was also eating 1-2 baby food jars and a serving of chips (another 200+ calories), so we had to add a fourth feed to the day for her.
Last week during on of the dizzy spells, she told me, "I'm flying away." This photo reminded me of that. (click to enlarge)
KayTar needs to eat four times per day and intake a total of 32 ounces of Pediasure each day*. Her feeds should be as equally spaced as possible, to avoid overfilling or underfilling. While KayTar can eat while sleeping, either in the morning or at night, she cannot eat between the hours of 12-3pm or 5:30-9pm on Monday-Friday. Furthermore, she cannot eat between the hours of 7:30-9am on Tuesdays. At what times should KayTar eat?
Failed solutions to this problem:
The Saturday/Sunday solution of 10am, 2pm, 6pm, 10pm
9am, 1pm, 5pm, 9pm
7am, 11am, 3pm, 7pm
10am, 3pm, 7pm, 12am
8am, 12pm, 4pm, 8pm
And so on...
*She was having dizzy spells last week. Hello there hypoglycemia, nice to meet you! While she is used to drinking only 3 Pediasures per day, on good days, she was also eating 1-2 baby food jars and a serving of chips (another 200+ calories), so we had to add a fourth feed to the day for her.
Sunday, November 16, 2008
Saturday, November 15, 2008
Friday, November 14, 2008
Post-op Day 10.
KayTar is healing up wonderfully!
She is off the narcotics.
Her g-button site is looking great. No redness or inflammation.
She isn't experiencing any tenderness with her feeds.
Her biopsy bandage came off today and it is healing nicely. She's hardcore now, what with the belly piercing and wicked leg scar.
Chances are, she will be back in school next week!
She still has a touch of the death breath from the T&A surgery. It is a sad day when you think your kiddo has a dirty diaper, but alas, you realize it is just the smell of her not-so-sweet morning breath. Blech!
She still isn't taking much of anything by mouth, a few sips of fluid per day and today she had a Pringle or two, but she's still getting everything she needs.
All in all, the recovery has been so much easier than I feared. Outside of a few heartbreaking moments like waking up post-op and saying, "I'm broken." or drawing that crying self-portrait, we've both fared well. She's handled it all in typical KayTar-fashion, with smiles and giggles all along the way. I'm glad she's on the other side of it all and life can start to get back to normal around here...or our approximation of normal, at least, whatever that is!
She is off the narcotics.
Her g-button site is looking great. No redness or inflammation.
She isn't experiencing any tenderness with her feeds.
Her biopsy bandage came off today and it is healing nicely. She's hardcore now, what with the belly piercing and wicked leg scar.
Chances are, she will be back in school next week!
She still has a touch of the death breath from the T&A surgery. It is a sad day when you think your kiddo has a dirty diaper, but alas, you realize it is just the smell of her not-so-sweet morning breath. Blech!
She still isn't taking much of anything by mouth, a few sips of fluid per day and today she had a Pringle or two, but she's still getting everything she needs.
All in all, the recovery has been so much easier than I feared. Outside of a few heartbreaking moments like waking up post-op and saying, "I'm broken." or drawing that crying self-portrait, we've both fared well. She's handled it all in typical KayTar-fashion, with smiles and giggles all along the way. I'm glad she's on the other side of it all and life can start to get back to normal around here...or our approximation of normal, at least, whatever that is!
Thursday, November 13, 2008
Yesterday,
I cleaned the living room, the bathroom, the kids' rooms.
I did laundry.
I played Potato Head, trains, dollhouse.
I read books.
I studied.
I emailed a few people just to say hello.
These things sound ordinary, but they aren't. These are things I haven't felt like doing in months, it seems. I've been doing them, half-heartedly, because life demands it be done. Kids must be fed, clothed, read to, played with. House must be tidied, cleaned. Laundry must be washed. Studying must be done, even if only in a OH-MY-GOD-I'VE-PUT-THIS-OFF-TOO-LONG-AND-MUST-CRAM-NOW sort of way. Emails have to be sent, replied to. Life has to happen, whether you feel up to it or not.
But yesterday, I woke up and instead of plugging myself into the computer straightaway, I cleaned up. I felt like getting things done. I felt like being social. I felt like playing. I felt GOOD. I didn't realize that I haven't felt that way in a long while, until I felt it again. I've had this bezoar in my gut for months now; stress, anxiety, fear, grief...compressed and twisted and turned into something almost unrecognizable, something I didn't want to recognize, really.
I've distracted myself, focused on things that don't matter. I've avoided talking to people for fear of having to acknowledge my emotions or see them mirrored in someone else. Of course, you can't avoid everyone all the time...when forced to update someone or fill them in on things, I limited myself to very factual and flippant statements, "Yeah, she's getting a g-button installed, you know, like a tiny gas pump...fill 'er up and go." I didn't want to see concern reflected in their faces. I didn't want to process my own concern, much less soothe someone else's. I couldn't study, because I simply couldn't focus. I've used this space as a pressure release valve, I've let off exactly enough emotion to keep it from exploding all over the place.
I don't know exactly how long it has been happening, I wasn't even aware of any of it until yesterday. My heart was war torn, ravaged by the years filled with recurrent battles of nutrition and hydration, broken by the perceived defeat of surrender. The reality of this surgery has so far surpassed my hopes while simultaneously nullifying so many fears that my head has finally cleared. Yesterday, I felt genuinely good for no reason at all, except that the hardened lump of fears and anxieties that has been fossilizing in my belly for such a long time was suddenly nowhere to be found.
I did laundry.
I played Potato Head, trains, dollhouse.
I read books.
I studied.
I emailed a few people just to say hello.
These things sound ordinary, but they aren't. These are things I haven't felt like doing in months, it seems. I've been doing them, half-heartedly, because life demands it be done. Kids must be fed, clothed, read to, played with. House must be tidied, cleaned. Laundry must be washed. Studying must be done, even if only in a OH-MY-GOD-I'VE-PUT-THIS-OFF-TOO-LONG-AND-MUST-CRAM-NOW sort of way. Emails have to be sent, replied to. Life has to happen, whether you feel up to it or not.
But yesterday, I woke up and instead of plugging myself into the computer straightaway, I cleaned up. I felt like getting things done. I felt like being social. I felt like playing. I felt GOOD. I didn't realize that I haven't felt that way in a long while, until I felt it again. I've had this bezoar in my gut for months now; stress, anxiety, fear, grief...compressed and twisted and turned into something almost unrecognizable, something I didn't want to recognize, really.
I've distracted myself, focused on things that don't matter. I've avoided talking to people for fear of having to acknowledge my emotions or see them mirrored in someone else. Of course, you can't avoid everyone all the time...when forced to update someone or fill them in on things, I limited myself to very factual and flippant statements, "Yeah, she's getting a g-button installed, you know, like a tiny gas pump...fill 'er up and go." I didn't want to see concern reflected in their faces. I didn't want to process my own concern, much less soothe someone else's. I couldn't study, because I simply couldn't focus. I've used this space as a pressure release valve, I've let off exactly enough emotion to keep it from exploding all over the place.
I don't know exactly how long it has been happening, I wasn't even aware of any of it until yesterday. My heart was war torn, ravaged by the years filled with recurrent battles of nutrition and hydration, broken by the perceived defeat of surrender. The reality of this surgery has so far surpassed my hopes while simultaneously nullifying so many fears that my head has finally cleared. Yesterday, I felt genuinely good for no reason at all, except that the hardened lump of fears and anxieties that has been fossilizing in my belly for such a long time was suddenly nowhere to be found.
Wednesday, November 12, 2008
The Easy Button
I did something amazing last night.
I fed KayTar and gave her medications, after she was asleep.
Yes, that's right. My child ate and took medication while she was sleeping.
It was amazing.
She hit the wall yesterday afternoon. Her body was pained and exhausted and it culminated in a mega-breakdown. She was a sobbing miserable mess, so I took her to the bed and cuddled with her for a while. She curled into me, great big fetus style, her little knees pushing against my stomach and her head nuzzled in my chest, a ball of preschooler. She stayed there, still and quiet for a very long time. My poor little girl. I was almost certain I would be missing class again, staying home to lend her the comfort she so obviously needed in that moment, but she perked up in the nick of time. She told me I could go to school, Daddy would take care of her. She still wasn't her best and I decided to skip the lab portion of class, so I could get back to her quickly.
I got home around 7:30 and she was already asleep. Her little body was just worn out. Healing is hard work. We had a small problem, though, she needed her nightly dose of antibiotics and she hadn't "eaten" or had pain medication since around 3pm. Though we were concerned about waking her accidentally, we didn't want her to go without her medicine. We decided to give it a shot, at least try to give her the medications.
I gathered the supplies and sneaked in the bedroom.
I opened her port. Froze. Looked at her, motionless.
I hooked up the bolus tube. Froze. Looked at her. Still motionless.
I ran in her medications. Lortab, Amoxicillin, Miralax and water. She slept.
I shout-whispered to Josh, "Bring me a Pediasure!"
I ran in 2 ounces. She slept.
I waited a bit.
I ran in 2 ounces. She slept.
I flushed the line.
I disconnected the line. Froze. Watched her. Still sleeping.
I closed her port.
I zipped her footsie pajamas.
I kissed her head.
I sneaked back out.
Medication and nutrition in her sleep. Wow.
We discussed these things before the surgery. We made the decision to get the button for these very reasons; the ability to feed her when she felt too poorly to feed herself, the ability to keep her hydrated, the ability to be able to give her nutrition and fluids and medication while she slept...we discussed all of it. Though, somehow putting it into practice feels like an unexpected gift, each and every time. It had only been a week and already, it has done so much for her and for us.
[Would have been] Wordless Wednesday: The Blue Plate Special
It's what for breakfast...and lunch...and dinner...and midnight snack.
I fed KayTar and gave her medications, after she was asleep.
Yes, that's right. My child ate and took medication while she was sleeping.
It was amazing.
She hit the wall yesterday afternoon. Her body was pained and exhausted and it culminated in a mega-breakdown. She was a sobbing miserable mess, so I took her to the bed and cuddled with her for a while. She curled into me, great big fetus style, her little knees pushing against my stomach and her head nuzzled in my chest, a ball of preschooler. She stayed there, still and quiet for a very long time. My poor little girl. I was almost certain I would be missing class again, staying home to lend her the comfort she so obviously needed in that moment, but she perked up in the nick of time. She told me I could go to school, Daddy would take care of her. She still wasn't her best and I decided to skip the lab portion of class, so I could get back to her quickly.
I got home around 7:30 and she was already asleep. Her little body was just worn out. Healing is hard work. We had a small problem, though, she needed her nightly dose of antibiotics and she hadn't "eaten" or had pain medication since around 3pm. Though we were concerned about waking her accidentally, we didn't want her to go without her medicine. We decided to give it a shot, at least try to give her the medications.
I gathered the supplies and sneaked in the bedroom.
I opened her port. Froze. Looked at her, motionless.
I hooked up the bolus tube. Froze. Looked at her. Still motionless.
I ran in her medications. Lortab, Amoxicillin, Miralax and water. She slept.
I shout-whispered to Josh, "Bring me a Pediasure!"
I ran in 2 ounces. She slept.
I waited a bit.
I ran in 2 ounces. She slept.
I flushed the line.
I disconnected the line. Froze. Watched her. Still sleeping.
I closed her port.
I zipped her footsie pajamas.
I kissed her head.
I sneaked back out.
Medication and nutrition in her sleep. Wow.
We discussed these things before the surgery. We made the decision to get the button for these very reasons; the ability to feed her when she felt too poorly to feed herself, the ability to keep her hydrated, the ability to be able to give her nutrition and fluids and medication while she slept...we discussed all of it. Though, somehow putting it into practice feels like an unexpected gift, each and every time. It had only been a week and already, it has done so much for her and for us.
It's what for breakfast...and lunch...and dinner...and midnight snack.
Tuesday, November 11, 2008
Monday, November 10, 2008
News on the KayTar front:
Feeds are getting easier, hardly any associated discomfort, though she seems to be feeling worse a bit in general. She still isn't taking anything by mouth, but is asking for tube feeds. "Mommy, will you feed me in my tummy?" She will specify where she wants to eat, too, either the bed or her little chair.
Last night she had trouble with snoring and I thought the adenoid swelling probably peaked, but this morning she woke up gagging, so I think that perhaps TODAY the swelling has increased more so to the point of making her feel nauseated. She also doesn't want to get out of bed this morning, which makes me think she is feeling quite poorly in general. I'm hoping she will be over the hump soon, though.
She's really doing well, even if these little updates don't always sound that way. We're happy to be home, she's mostly comfortable, and she's been up and around playing quite a bit. She laughs and smiles, and yesterday I caught her showing off her button to her brother, "This is my belly button. I can eat with my tummy. The doctor gave it to me. I like Dr. M, he has chili peppers on his hat." She's getting there, slowly but surely...just like she always does.
Saturday, November 08, 2008
Saddest self-portrait ever.
KayTar drew that today. She said, "That's me."
I pointed at the lines at the bottom of her eyes and said, "What are those?"
"Tears." she said, "I'm crying because I don't feel good."
Did you hear that sound? Yes, it was the sound of my heart breaking.
My poor sweet girl, creating her own little preschool pain scale.
It isn't an exact match, but I suspect that it might be a Number 10 putting on its very bravest face.
Friday, November 07, 2008
More of the same...
Last night went well, KayTar and I enjoyed a lovely full night of sleep in my big comfy bed. Josh will be bunking in KayTar's flowery twin bed for the next little while, but he slept fine, except for the recurrent dreams of butterflies and fairies. She woke me up a few times, I'd hear her say, "Mom!" or "Dad!" and open my eyes to find her sitting upright in bed with her eyes completely closed. She'd say something like "Where am I? I can't see ANYFING!" And I'd reach over and say, "Remember? We're home now, let's lay down and sleep." Oh, the fun of preschoolers on narcotics.
This morning, BubTar went to school and was promptly returned home to me. Without giving too much away, he is having serious intestinal troubles that began as a bit of a SURPRISE for him. I'm a little bit freaked out that he's brought home some GI virus that he will see fit to share with the rest of us, especially KayTar. Can you imagine her getting the pukes with the state of her stomach and throat? Let's not think too much about that. Needless to say, quarantine is back in swing, sponsored by Lysol and Purell.
The perkiness of last night has worn off, I think it was a Lortab buzz combined with the rush of being pain-free for the first time in hours. She's in good spirits, but much more mellow than she was last night. She's tolerating her full feeds and every time it gets a little less painful (her site is still pretty tender). Last night she got upset when I was hooking her up and she jerked the bolus tube off. YEEOW! She doesn't seem to want to repeat that experience and is less apt to grab at things, even if she is still a little uncomfortable. As long as I give her hands a little squeeze after every step, ("Okay, I'm going to open your valve now" Squeeze hand. "I'm going to hook in the tube now." Squeeze hand.") she is mostly agreeable. During her pseudo-lunch, she even wanted to help hold the big bolus syringe. She is also quite fond of using the bolus tube as a microphone to announce important things like, "I like flowers and hearts!". She whimpers a little when I tell her it time to eat, because of the tenderness, but it will get easier and easier as it heals. She's adjusting really well, all things considered.
This morning, BubTar went to school and was promptly returned home to me. Without giving too much away, he is having serious intestinal troubles that began as a bit of a SURPRISE for him. I'm a little bit freaked out that he's brought home some GI virus that he will see fit to share with the rest of us, especially KayTar. Can you imagine her getting the pukes with the state of her stomach and throat? Let's not think too much about that. Needless to say, quarantine is back in swing, sponsored by Lysol and Purell.
The perkiness of last night has worn off, I think it was a Lortab buzz combined with the rush of being pain-free for the first time in hours. She's in good spirits, but much more mellow than she was last night. She's tolerating her full feeds and every time it gets a little less painful (her site is still pretty tender). Last night she got upset when I was hooking her up and she jerked the bolus tube off. YEEOW! She doesn't seem to want to repeat that experience and is less apt to grab at things, even if she is still a little uncomfortable. As long as I give her hands a little squeeze after every step, ("Okay, I'm going to open your valve now" Squeeze hand. "I'm going to hook in the tube now." Squeeze hand.") she is mostly agreeable. During her pseudo-lunch, she even wanted to help hold the big bolus syringe. She is also quite fond of using the bolus tube as a microphone to announce important things like, "I like flowers and hearts!". She whimpers a little when I tell her it time to eat, because of the tenderness, but it will get easier and easier as it heals. She's adjusting really well, all things considered.
Thursday, November 06, 2008
We're home.
Oh, yes we are.
Today was a longish sort of day and I'm feeling that rush of exhaustion that stems from finally being able to relax a little.
This morning she had her first Pediasure feed via the tube. Most of you already know that she calls it "chocolate milk". Well, when I asked her how it felt going into her tummy she said, "Too chocolatey." She makes me laugh.
A lurky local blog reader (Hi there!) emailed me this morning to see if she could bring KayTar a little get well gift. She left it at the nurses station and they delivered it to KayTar. She was THRILLED! It was such a thoughtful and sweet gesture! I don't know if she wants me to give her name or not, so I won't...but everyone tell her how KIND she is, because I'm sure she'll see this! Check it out...
A homemade tutu and wand! She was in heaven. She wore it all day long. She spent most of the day out of her bed. We went on walks around the floor, she played in our mega-room, and we even took a wagon ride to the cafeteria so I could eat lunch. The tutu got rave reviews all around. She also did a craft today, see her pretty bracelet?
This afternoon, the nurses trained me on tube usage and I fed her for the first time. It was still a little painful, but not too bad. After every 2 ounces, I asked her if her tummy was full or if she wanted more. After 2 ounces, she wanted more. After 4 ounces, she wanted more. After 6 ounces, her eyes closed and she was snoring away. A nice full bellied nap. After that, we were free to go! By the time we got home she was hurting pretty badly, because she hadn't had pain medication since morning. She was running a little fever and was generally miserable. Once we got her codeine laced tylenol into her little body and chased it with some Pediasure, she perked up, though. She's currently wandering around the living room, watching Blue's Clues in her fairy pajamas with her tutu on over them. Perky as ever. It is a beautiful thing.
Today she has probably had 5 sips of fluid total, but she's gotten almost all of her fluid, calories, and medications for the day already. By the time she goes to sleep tonight, she will have had everything she needs. And that, too, is a beautiful thing.
Today was a longish sort of day and I'm feeling that rush of exhaustion that stems from finally being able to relax a little.
This morning she had her first Pediasure feed via the tube. Most of you already know that she calls it "chocolate milk". Well, when I asked her how it felt going into her tummy she said, "Too chocolatey." She makes me laugh.
A lurky local blog reader (Hi there!) emailed me this morning to see if she could bring KayTar a little get well gift. She left it at the nurses station and they delivered it to KayTar. She was THRILLED! It was such a thoughtful and sweet gesture! I don't know if she wants me to give her name or not, so I won't...but everyone tell her how KIND she is, because I'm sure she'll see this! Check it out...
A homemade tutu and wand! She was in heaven. She wore it all day long. She spent most of the day out of her bed. We went on walks around the floor, she played in our mega-room, and we even took a wagon ride to the cafeteria so I could eat lunch. The tutu got rave reviews all around. She also did a craft today, see her pretty bracelet?
This afternoon, the nurses trained me on tube usage and I fed her for the first time. It was still a little painful, but not too bad. After every 2 ounces, I asked her if her tummy was full or if she wanted more. After 2 ounces, she wanted more. After 4 ounces, she wanted more. After 6 ounces, her eyes closed and she was snoring away. A nice full bellied nap. After that, we were free to go! By the time we got home she was hurting pretty badly, because she hadn't had pain medication since morning. She was running a little fever and was generally miserable. Once we got her codeine laced tylenol into her little body and chased it with some Pediasure, she perked up, though. She's currently wandering around the living room, watching Blue's Clues in her fairy pajamas with her tutu on over them. Perky as ever. It is a beautiful thing.
Today she has probably had 5 sips of fluid total, but she's gotten almost all of her fluid, calories, and medications for the day already. By the time she goes to sleep tonight, she will have had everything she needs. And that, too, is a beautiful thing.
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