Well, looks like Emily is going to spend her sweet 13 in the hospital. After a frightening few hours this morning, she's finally stable, although hospitalized.
I took her to her family doctor this morning where her temperature was found to be 104.7. He decided there was no point in trying to figure out what was wrong when she obviously needed to be in the hospital. He felt she could make it there if I took her and didn't need an ambulance. Thank God for that.
I went home to get a bag, and checked her temp again 104.9. Terrifying is too kind a word for that drive to the hospital. She got in fairly quickly, although they never seem quite as concerned as I am.
Various tests were performed. Labs drawn, IV started. At that point, Emily was hardly waking up at all no matter what they did to her.
Then the words I've been dreading for 7 years came out of the doctors mouth. She's positive for type A flu. She has pneumonia, and she's dehydrated. 30 hours ago, I was debating about her being well enough to go to school. Now she has an IV, meds and monitors.
I just keep thinking how grateful we are to have access to hospitals. There is no way she could survive the flu otherwise. She's sick enough and we are blessed with wonderful medical care. I know how dangerous the flu can be, and so far I have no reason to think otherwise.
Please keep her in your prayers and thank God for the sovereignty of His plan. I do not know what any day may bring, but I trust him. Every day that is my first thought. I have no idea where I'll lay my head tonight, but I trust you.
Today, I trust you with my girl. Thank you for loving her more than I could ever imagine loving her. Thank you for your care of our family. You are so good! --Amen!
update* We are settled in her room. Her heart rate is down and her O2 sats are up a little. She still has 102.2 fever, but she's resting more comfortably. She is on isolation for the flu, so she's not diggin everyone wearing masks and gowns when they touch her. She doesn't feel well enough to complain for too long though. I'll keep you posted. Thanks for checking on my sweet girl.
Wednesday, January 26, 2011
Tuesday, January 25, 2011
My Sick Child
Emily is sick. Bless her precious heart. I just can't stand it. She has a fever, she's nauseated and coughing.
I hate how afraid I feel the minute I realize somethings wrong with her. Any other child would just have a cold, but for her, every illness is a potentially giant problem.
She had the flu when she was six years old (the real full-blown type A flu). She ran a fever Dec. 26th, and went in to the hospital December 31. She checked in as a healthy little girl who loved food and had an awesome zest for life. She spent 28 days over the next 6 weeks in the hospital including an ICU stay, numerous procedures and a major surgery.
At the end she had mitral valve prolapse caused by the virus, a G-tube, reflux surgery, finally weaned off oxygen, but was unable to eat by mouth. She returned to school 4 months after she first got sick. She's never been the same.
I look back at pictures of that Christmas day all of those years ago and know that was the last moment she felt really good. Her cheeks were full and her eyes bright. She came home frail and small. She lost 5 pounds (that's quite a bit for a 35 pound girl.)
It took us a year of intensive work to get her eating by mouth again. We still use the tube, but she eats meals with the family. Over the last 7 years, we have painstakingly gotten 15 pounds on her. She is a 50 pound almost teenager (2 days to the big 13). Every single ounce is a struggle. The kid eats...a lot! Most people are stunned by the calories she consumes, but her tight muscles constantly burn calories and frequent nausea keeps it a challenge.
In the course of writing this post her temp has gone up to 103. She's thrown up Pedialyte twice and her Zofran (for nausea). She tried to throw up her seizure meds, but I gave it with such little liquid she couldn't. She just gagged and wretched for 20 minutes, but the meds stayed down. Now she needs Motrin, really badly. I can't put it on her sick stomach. I gave a Phenergan (different nausea med). Hopefully she'll soon be able to keep Motrin down, then some fluids. If not, to the hospital we go.
Every single time she gets sick I feel this awful panic rise up. I am so afraid of losing her. I know that some of my friends would say I shouldn't even say that, but it's true. We've been through so much and I completely trust God with her, but I do not want to walk down that road. I'm afraid of having a child in the hospital for months on end and wondering if and when it will be over.
All I can do is pray, take care of my girl and trust that which ever way this goes, we'll work it out. One good note is that she hasn't had any seizures that I'm aware of. Sometimes kids have breakthrough seizures when they're sick. So far so good, I'm thankful for that.
Now, off to attempt Motrin.
I hate how afraid I feel the minute I realize somethings wrong with her. Any other child would just have a cold, but for her, every illness is a potentially giant problem.
She had the flu when she was six years old (the real full-blown type A flu). She ran a fever Dec. 26th, and went in to the hospital December 31. She checked in as a healthy little girl who loved food and had an awesome zest for life. She spent 28 days over the next 6 weeks in the hospital including an ICU stay, numerous procedures and a major surgery.
At the end she had mitral valve prolapse caused by the virus, a G-tube, reflux surgery, finally weaned off oxygen, but was unable to eat by mouth. She returned to school 4 months after she first got sick. She's never been the same.
I look back at pictures of that Christmas day all of those years ago and know that was the last moment she felt really good. Her cheeks were full and her eyes bright. She came home frail and small. She lost 5 pounds (that's quite a bit for a 35 pound girl.)
It took us a year of intensive work to get her eating by mouth again. We still use the tube, but she eats meals with the family. Over the last 7 years, we have painstakingly gotten 15 pounds on her. She is a 50 pound almost teenager (2 days to the big 13). Every single ounce is a struggle. The kid eats...a lot! Most people are stunned by the calories she consumes, but her tight muscles constantly burn calories and frequent nausea keeps it a challenge.
In the course of writing this post her temp has gone up to 103. She's thrown up Pedialyte twice and her Zofran (for nausea). She tried to throw up her seizure meds, but I gave it with such little liquid she couldn't. She just gagged and wretched for 20 minutes, but the meds stayed down. Now she needs Motrin, really badly. I can't put it on her sick stomach. I gave a Phenergan (different nausea med). Hopefully she'll soon be able to keep Motrin down, then some fluids. If not, to the hospital we go.
Every single time she gets sick I feel this awful panic rise up. I am so afraid of losing her. I know that some of my friends would say I shouldn't even say that, but it's true. We've been through so much and I completely trust God with her, but I do not want to walk down that road. I'm afraid of having a child in the hospital for months on end and wondering if and when it will be over.
All I can do is pray, take care of my girl and trust that which ever way this goes, we'll work it out. One good note is that she hasn't had any seizures that I'm aware of. Sometimes kids have breakthrough seizures when they're sick. So far so good, I'm thankful for that.
Now, off to attempt Motrin.
Monday, January 24, 2011
Saint or sinner?
"You-are-a-SAINT!" A stranger exclaimed as I sat in the mall feeding Emily and Abby.
The girls always choose different foods for lunch, so as I fed them, I mixed up their bites. They were laughing at me; Hannah, Sarah, and I quickly joined in. From a glance, I probably looked like Mother Teresa bringing food and joy to the least of these.
My standard reply to this unexpected canonization flew out of my mouth with a smile, "I'm not a saint, just a mom and they have to eat, right?"
It does make me wonder; am I a saint...a sinner...either of them?
I wake up each day with the intention of doing the best I can do. Sometimes I look at my girls and think 'Yes! this is exactly what I've hoped for them', other days, 'Exactly how many days do I have left with them to try to do this right?' Neither thought makes me a saint or a sinner. I've certainly not considered myself a saint, ever. I try not to think of myself as a sinner either, but I am. A sinner in need of a Savior.
I am a saint also...yes folks, really. Saved by grace.
It's not because of my skills as a mother (trust me...not). No amount of good work or parenting that I could ever do would make me a saint. I'm not a saint of Catholic standards, for sure. I'm not exalted into sainthood because I choose to care for Emily and Abigail. I'm a saint because my God says I am a part of His family.
"Now, therefore, you are no longer strangers and foreigners, but fellow citizens with the saints and members of the household of God, having been built on the foundation of the apostles and prophets, Jesus Christ Himself being the chief cornerstone" Ephesians 2:18-19 (NKJ)
The word saint comes from the Greek word "hagios" which means “consecrated to God, holy, sacred, pious." Saints of the bible (and today) are literally the body of Christ and are almost always referred to in plural. We are meant to serve together. There is certainly a world view of the word, but it holds significant meaning in our faith.
So, how do you think of yourself ?
What about others?
Do you look at those around you like my new friend at the mall did and think "she's definitely a saint. I couldn't do what she does." Or do you look at those obviously making mistakes and think, "well, they're toast! Why can't they get ever get it together?"
As humans, we quickly try to categorize people based on their circumstance. Where they live, the way they speak, or what they look like. I do it too. Sometimes I can't help myself. An opinion pops in my mind before I even think about it.
I realize and appreciate that someone is trying to say "I see you" or "I don't think I could do what you do". We all do what God equips us to do. But human works, however wonderful they may be, can not create saints. What makes one a saint is grace. Grace that I don't even understand. My bible says that when I believed, I was a saint, not because of anything I did and not because of my failures, but because of the amazing grace of God.
We are in citizenship with Christ. Counted among his own. So as we walk through life, let us not imagine ones' status based on a glance at another. Let's have a conversation about Jesus Christ and how amazing it is to be counted as one of the saints in His family.
I think I will change my standard reply from, "I'm a mom" to "I'm a saint because I serve Jesus and and strive to live His word".
So my dear Saints, what do you believe?
"among whom you also are the called of Jesus Christ; To all who are in Rome, beloved of God, called to be saints: Grace to you and peace from God our Father and the Lord Jesus Christ." Romans 1:6-7 (NkJ)
The girls always choose different foods for lunch, so as I fed them, I mixed up their bites. They were laughing at me; Hannah, Sarah, and I quickly joined in. From a glance, I probably looked like Mother Teresa bringing food and joy to the least of these.
My standard reply to this unexpected canonization flew out of my mouth with a smile, "I'm not a saint, just a mom and they have to eat, right?"
It does make me wonder; am I a saint...a sinner...either of them?
I wake up each day with the intention of doing the best I can do. Sometimes I look at my girls and think 'Yes! this is exactly what I've hoped for them', other days, 'Exactly how many days do I have left with them to try to do this right?' Neither thought makes me a saint or a sinner. I've certainly not considered myself a saint, ever. I try not to think of myself as a sinner either, but I am. A sinner in need of a Savior.
I am a saint also...yes folks, really. Saved by grace.
It's not because of my skills as a mother (trust me...not). No amount of good work or parenting that I could ever do would make me a saint. I'm not a saint of Catholic standards, for sure. I'm not exalted into sainthood because I choose to care for Emily and Abigail. I'm a saint because my God says I am a part of His family.
"Now, therefore, you are no longer strangers and foreigners, but fellow citizens with the saints and members of the household of God, having been built on the foundation of the apostles and prophets, Jesus Christ Himself being the chief cornerstone" Ephesians 2:18-19 (NKJ)
The word saint comes from the Greek word "hagios" which means “consecrated to God, holy, sacred, pious." Saints of the bible (and today) are literally the body of Christ and are almost always referred to in plural. We are meant to serve together. There is certainly a world view of the word, but it holds significant meaning in our faith.
So, how do you think of yourself ?
What about others?
Do you look at those around you like my new friend at the mall did and think "she's definitely a saint. I couldn't do what she does." Or do you look at those obviously making mistakes and think, "well, they're toast! Why can't they get ever get it together?"
As humans, we quickly try to categorize people based on their circumstance. Where they live, the way they speak, or what they look like. I do it too. Sometimes I can't help myself. An opinion pops in my mind before I even think about it.
I realize and appreciate that someone is trying to say "I see you" or "I don't think I could do what you do". We all do what God equips us to do. But human works, however wonderful they may be, can not create saints. What makes one a saint is grace. Grace that I don't even understand. My bible says that when I believed, I was a saint, not because of anything I did and not because of my failures, but because of the amazing grace of God.
We are in citizenship with Christ. Counted among his own. So as we walk through life, let us not imagine ones' status based on a glance at another. Let's have a conversation about Jesus Christ and how amazing it is to be counted as one of the saints in His family.
I think I will change my standard reply from, "I'm a mom" to "I'm a saint because I serve Jesus and and strive to live His word".
So my dear Saints, what do you believe?
"among whom you also are the called of Jesus Christ; To all who are in Rome, beloved of God, called to be saints: Grace to you and peace from God our Father and the Lord Jesus Christ." Romans 1:6-7 (NkJ)
Tuesday, January 18, 2011
Insurance
Okay, ya'll I'm going to try to stay Christian and talk about insurance at the same time.
I'm thankful to have it, don't get me wrong, but it's driving me CRAZY lately. From suddenly doubled deductibles to constant changes in medication restrictions, I just want to scream.
Emily has been fairly stable lately as far as her seizures go, but she had to go on the brand name medication. The generic for the pharmacy our insurance insists we use did not work. She had 11 seizures the one week she was on it. A month on the brand name med and she's doing great. I was always in the "they're all the same" school of thought as far as meds go and saw no particular reason not to use the generic brands. I still think that's basically true. Never having needed to challenge the use of generics before, I didn't realize how difficult it is.
I went to get her medicine refilled and because the price of the medicine went up by $20, it exceeds the amount covered, and therefore basically isn't covered (it's much more complicated than that, but again, I'm trying to stay sweet). Twenty bucks is the difference between being well controlled on seizure meds and having to start over. You know what stinks? No one will take my $20. I tried to pay the pharmacy, and both of Emily's insurance companies... they won't take my money. It has to do with original price, blah, blah, blah. It is very expensive, so I can see why they don't want to cover it, but I look at Emily's face and imagine her little brain out of control and I want to cry. It's hard to sympathize with and insurance company when I see my girl.
We have dealt repeatedly with frustrating insurance problems over the years. This one just seems never ending. Month after month we have to fight with them. And in the middle of it is my daughter.
I want to get really mad and really mean. I can't. It's not the fault of whomever has the misfortune to pick up the phone when I call. I can't get nuts. I did let them know about the little girl who has the misfortune of a brain that misfires and causes seizures that make her sick behind the policy and hope the call is recorded. I'm working on the appeals process and praying Emily does alright in the mean time.
These situations are not so much about faith as they are about attitude. I have a responsiblitly to live what I believe. It doesn't matter how "right" or "just" I am. It doesn't matter how wrong they are. Yes, I'm angry and frustrated, but that doesn't excuse poor behavior. I complained about it on the phone with my husband and my friend--I'll work on that later :). With the doctors and the insurance company I watch my tone and my words.
Those who guard their mouths and their tongues
keep themselves from calamity. Proverbs 21:23 (NIV)
I'm thankful to have it, don't get me wrong, but it's driving me CRAZY lately. From suddenly doubled deductibles to constant changes in medication restrictions, I just want to scream.
Emily has been fairly stable lately as far as her seizures go, but she had to go on the brand name medication. The generic for the pharmacy our insurance insists we use did not work. She had 11 seizures the one week she was on it. A month on the brand name med and she's doing great. I was always in the "they're all the same" school of thought as far as meds go and saw no particular reason not to use the generic brands. I still think that's basically true. Never having needed to challenge the use of generics before, I didn't realize how difficult it is.
I went to get her medicine refilled and because the price of the medicine went up by $20, it exceeds the amount covered, and therefore basically isn't covered (it's much more complicated than that, but again, I'm trying to stay sweet). Twenty bucks is the difference between being well controlled on seizure meds and having to start over. You know what stinks? No one will take my $20. I tried to pay the pharmacy, and both of Emily's insurance companies... they won't take my money. It has to do with original price, blah, blah, blah. It is very expensive, so I can see why they don't want to cover it, but I look at Emily's face and imagine her little brain out of control and I want to cry. It's hard to sympathize with and insurance company when I see my girl.
 |
| Emily having an EEG |
We have dealt repeatedly with frustrating insurance problems over the years. This one just seems never ending. Month after month we have to fight with them. And in the middle of it is my daughter.
I want to get really mad and really mean. I can't. It's not the fault of whomever has the misfortune to pick up the phone when I call. I can't get nuts. I did let them know about the little girl who has the misfortune of a brain that misfires and causes seizures that make her sick behind the policy and hope the call is recorded. I'm working on the appeals process and praying Emily does alright in the mean time.
These situations are not so much about faith as they are about attitude. I have a responsiblitly to live what I believe. It doesn't matter how "right" or "just" I am. It doesn't matter how wrong they are. Yes, I'm angry and frustrated, but that doesn't excuse poor behavior. I complained about it on the phone with my husband and my friend--I'll work on that later :). With the doctors and the insurance company I watch my tone and my words.
Those who guard their mouths and their tongues
keep themselves from calamity. Proverbs 21:23 (NIV)
Sunday, January 16, 2011
Home again?
I'm back from a little bloggy break.
We spent some time with Jeff as my Florida kids played in the snow and got their first glimpse at becoming Carolina girls.
That was probably the last trip I take with all the kids before we move. It was bittersweet. It's incredibly hard having a foot in both worlds--I've never been particularly nimble. I have a life I love here and yet my husband and a new calling are waiting for me. My future in one place, my heart still in this one.
It's overwhelming when I think about moving, but as is true with everything in life, I know we'll figure it all out. I just have to cope with it all in the mean time and I'm not sure I'm handling that part so well. As I write this, I glance to the side of the bed where my husband sleeps. Of course he's not here.
Something's here though.
A bag of Chips Ahoy Chocolate Chip Cookies has taken his place in the bed. They are under the covers so the kids can't find them. It is a dirty, shameful little secret.
I'm having a little emotional fling with cookies and it's kind of working for me.
Okay, so I haven't exactly replaced Jeff, but the bag of cookies are my temporary bed fella. I'm cringing at the guilt I feel from hiding those cookies, and yet they stay.
I absolutely need to put down the cookies and slowly step away. Being overwhelmed by such big life changes make me want to stop doing what needs to be done--even the little things like laundry and what in the world is for dinner? begin to feel like a Mt. Everest expedition. So, the cookies move in. Cookies are so good about keeping quiet.
You know what's so great about Christianity? Jesus loves that girl hiding cookies in her bed. He loves the insecure, laundry avoiding me that I don't like. He takes the time to whisper to my heart and tell me that I can do this only because He says I can. He wants me. Plain ole' unsure, overwhelmed, trying to cope me.
I love Him for that.
I have a lot of really big things going on in my life. Decisions that I don't want to make must be made. So many times I wish I were just more. Quicker, smarter, braver, quieter, stronger, disciplined, steady, faithful. As often as I think any of those thoughts, I am reminded that Jesus did not die for that girl I wish I could be. He died for the girl I am. He rose again to take my hand and introduce me to the girl He says I can be. The girl who puts the cookies down, does what she needs to do, and gives Him the glory.
I love Him for that.
So home again. Working on being less overwhelmed by it all and as always, so thankful for my Jesus who is never surprised, worried, or overwhelmed.
We spent some time with Jeff as my Florida kids played in the snow and got their first glimpse at becoming Carolina girls.
That was probably the last trip I take with all the kids before we move. It was bittersweet. It's incredibly hard having a foot in both worlds--I've never been particularly nimble. I have a life I love here and yet my husband and a new calling are waiting for me. My future in one place, my heart still in this one.
It's overwhelming when I think about moving, but as is true with everything in life, I know we'll figure it all out. I just have to cope with it all in the mean time and I'm not sure I'm handling that part so well. As I write this, I glance to the side of the bed where my husband sleeps. Of course he's not here.
Something's here though.
A bag of Chips Ahoy Chocolate Chip Cookies has taken his place in the bed. They are under the covers so the kids can't find them. It is a dirty, shameful little secret.
I'm having a little emotional fling with cookies and it's kind of working for me.
Okay, so I haven't exactly replaced Jeff, but the bag of cookies are my temporary bed fella. I'm cringing at the guilt I feel from hiding those cookies, and yet they stay.
I absolutely need to put down the cookies and slowly step away. Being overwhelmed by such big life changes make me want to stop doing what needs to be done--even the little things like laundry and what in the world is for dinner? begin to feel like a Mt. Everest expedition. So, the cookies move in. Cookies are so good about keeping quiet.
You know what's so great about Christianity? Jesus loves that girl hiding cookies in her bed. He loves the insecure, laundry avoiding me that I don't like. He takes the time to whisper to my heart and tell me that I can do this only because He says I can. He wants me. Plain ole' unsure, overwhelmed, trying to cope me.
I love Him for that.
I have a lot of really big things going on in my life. Decisions that I don't want to make must be made. So many times I wish I were just more. Quicker, smarter, braver, quieter, stronger, disciplined, steady, faithful. As often as I think any of those thoughts, I am reminded that Jesus did not die for that girl I wish I could be. He died for the girl I am. He rose again to take my hand and introduce me to the girl He says I can be. The girl who puts the cookies down, does what she needs to do, and gives Him the glory.
I love Him for that.
So home again. Working on being less overwhelmed by it all and as always, so thankful for my Jesus who is never surprised, worried, or overwhelmed.
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