When you have a child who is ill, much of what you once thought was important gets stripped away. This week has been a time for letting go of many of the things we thought mattered, and buckling down to what does: Family, friends, and faith.
My heart has been upheld by the gift of prayer and love given by so many. People who stopped everything to ask what, if anything they could do. Offers ranged from a note telling me that someone would drive my car home from the ER if needed (something that would never have crossed my mind!) to food, laundry, dog walking and cat box cleanup. We missed church on Sunday, but I'm betting that there was loud applause when the pastor told them that we were on our way home!
The soundtrack of my mind is always playing. But this week, starting in the ambulance, and continuing until now, it has been this song:
Hold On To Jesus
I have come to this ocean
And the waves of fear are starting to grow
The doubts and questions are rising with the tide
So I'm clinging to the one sure thing I know
I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life
I've tried to hold many treasures
They just keep slipping through my fingers like sand
But there's one treasure that means more than breath itself
So I'm clinging to it with everything I am
I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life
Like a child holding on to a promise
I will cling to His word and believe
As I press on to take hold of that
for which Christ Jesus took hold of me
So I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life
Hold on for life
Stephen Curtis Chapman.
I'm holding.
DeeDee
Monday, April 30, 2012
Saturday, April 28, 2012
The Paralysis of Fear....
Babygirl's been sick for more than a year now. I've been worried, saddened, angered and disappointed. I've had a million emotions, but until this week I think I really did not have Fear.
I've felt it before. There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game. She missed, and went down like a bag of bones. There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.
But both of those times the fear was motivating. It made me alert to the risks, and more able to take action. It wasn't like this. This is paralysing.
I've always thought that it's tougher to be a parent when you know what can go wrong. Kids with eating disorders and asthma die, for sure. But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.
In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health. This illness, this hospitalization, were caused by medications given ostensibly to save her life. Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today than yesterday. If things pick up we may go home tomorrow. Or not. And there is now way she's going to school for at least a week, maybe two.
I have never seen the fight so taken out of a child. I never expected my Babygirl to look so beaten. I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.
I make these kinds of decisions for and with patients all the time. ALL the time. I'm not sure how I'll be able to organize my mind to continue doing so.
DeeDee
I've felt it before. There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game. She missed, and went down like a bag of bones. There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.
But both of those times the fear was motivating. It made me alert to the risks, and more able to take action. It wasn't like this. This is paralysing.
I've always thought that it's tougher to be a parent when you know what can go wrong. Kids with eating disorders and asthma die, for sure. But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.
In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health. This illness, this hospitalization, were caused by medications given ostensibly to save her life. Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today than yesterday. If things pick up we may go home tomorrow. Or not. And there is now way she's going to school for at least a week, maybe two.
I have never seen the fight so taken out of a child. I never expected my Babygirl to look so beaten. I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.
I make these kinds of decisions for and with patients all the time. ALL the time. I'm not sure how I'll be able to organize my mind to continue doing so.
DeeDee
Friday, April 27, 2012
It's Like Having AIDS......
People have been in touch, but the computer here is so slow that I can barely load FaceBook, let alone view the comments! Text messages are going out in groups, and coming back in droves. But some of the questions are fairly universal:
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Thursday, April 26, 2012
You Need Your Neutrophils....
Babygirl woke up this morning crying. Her head hurt, her legs hurt, her whole body hurt and she was FREEZING.
Her temperature was over 103. A call to the kidney specialists told me what I already knew: "Take her to the nearest ER."
We gave her her meds, ate breakfast (well, not her - she wasn't hungry), got dressed (comfy is important) and got into the car. She threw up, saturating the prayer shawl we'd brought along for warmth (sorry, Lynn). I ran into the house for a Ziploc bag and a new blanket. By the time we hit the ER that one had to be put into a plastic bag to be laundered also (sorry, Main St crew!).
Blood work. CAT scan. Morphine and Tylenol. Anti-emetics. Repeat the vomitted meds. Poke, prod, poke. WBC count down to 0.7, beyond critically low.
At noon, none the wiser about the cause of the fever but increasingly concerned about her inability to fight off whatever was causing it, we were loaded into an ambulance for a ride back to CHOP. We had time to pack, and I rode shotgun while Hubby drove the chase car.
By 4:30 we had finished a quick eval in CHOP's ER and were admitted to the floor. Poke, prod, poke, repeat. Discuss options. Consider additional testing. Start dangerously potent antibiotics.
Right now Babygirl is sleeping, Hubby is at Sister-in-law's house, and we're all still in the dark about where the infection is and what's causing it. The good news is we are surrounded by prayer from all around the country.
But I have never seen her look so sick.
DeeDee
Her temperature was over 103. A call to the kidney specialists told me what I already knew: "Take her to the nearest ER."
We gave her her meds, ate breakfast (well, not her - she wasn't hungry), got dressed (comfy is important) and got into the car. She threw up, saturating the prayer shawl we'd brought along for warmth (sorry, Lynn). I ran into the house for a Ziploc bag and a new blanket. By the time we hit the ER that one had to be put into a plastic bag to be laundered also (sorry, Main St crew!).
Blood work. CAT scan. Morphine and Tylenol. Anti-emetics. Repeat the vomitted meds. Poke, prod, poke. WBC count down to 0.7, beyond critically low.
At noon, none the wiser about the cause of the fever but increasingly concerned about her inability to fight off whatever was causing it, we were loaded into an ambulance for a ride back to CHOP. We had time to pack, and I rode shotgun while Hubby drove the chase car.
By 4:30 we had finished a quick eval in CHOP's ER and were admitted to the floor. Poke, prod, poke, repeat. Discuss options. Consider additional testing. Start dangerously potent antibiotics.
Right now Babygirl is sleeping, Hubby is at Sister-in-law's house, and we're all still in the dark about where the infection is and what's causing it. The good news is we are surrounded by prayer from all around the country.
But I have never seen her look so sick.
DeeDee
Wednesday, April 25, 2012
Week Fifty-three - That's the Way the Money Goes.....
We didn't qualify for the medical deduction in 2012, largely because we didn't pay all the bills! We were negotiating with our insurance for lower co-payments, negotiating with hospitals for lower costs, and waiting to see what, if anything, Medicare would do for us.
The final word is in: no decrease in the dialysis co-payments. The hospitals are re-billing many charges to both insurance companies, trying to make sure THIS time that the billing is in the correct order - first BlueCross/BlueShield, then Medicare, and hopefully most of our remaining balances will be covered. Our insurance company is negotiating with an emergency room provider group to get us a refund on an overcharge from last Father's Day. They are also working to fix a $55 co-payment overcharge from my local doctor.
We got back a sizeable tax refund. I wrote $5485 to the dialysis company, and I think there may still be a small outstanding balance. I paid the $490 for the kidney protector. I wrote out the $75 co-payments for our last dialysis visits, our transplant team visit (10 days pre-transplant) and other miscellaneous specialists. I paid for the SpeedPass bill (twenty dollars per trip x 14 trips) and updated payment to a credit card that's been picking up overflow expenses (car repairs, tires and oil changes, new toilet, things like that). I took the girls shopping for spring clothes, especially Babygirl, who had nothing that fit her at all. I caught up the outstanding dental balance and have enough to pay for Boo'sMom's college class.
We aren't behind on anything. Gas/electric/phone all current. Mortgage up to date. There is plenty of food in the cupboard and Babygirl's lunch account has plenty.
We started this adventure with a pretty solid emergency fund. There's a couple hundred left. And we are certainly going to qualify for the medical deductible this year between the mileage (23 cents a mile!), the bills, and my lower salary.
I have $33 in my checkbook until payday next week, a tank full of gas thanks to a friend's supermarket discount card, and enough cash to get us back and forth to Philly again because someone in my church handed me an envelope with $100 in it. And best of all, I have a gift certificate for a massage.
God is good, all the time.
DeeDee
The final word is in: no decrease in the dialysis co-payments. The hospitals are re-billing many charges to both insurance companies, trying to make sure THIS time that the billing is in the correct order - first BlueCross/BlueShield, then Medicare, and hopefully most of our remaining balances will be covered. Our insurance company is negotiating with an emergency room provider group to get us a refund on an overcharge from last Father's Day. They are also working to fix a $55 co-payment overcharge from my local doctor.
We got back a sizeable tax refund. I wrote $5485 to the dialysis company, and I think there may still be a small outstanding balance. I paid the $490 for the kidney protector. I wrote out the $75 co-payments for our last dialysis visits, our transplant team visit (10 days pre-transplant) and other miscellaneous specialists. I paid for the SpeedPass bill (twenty dollars per trip x 14 trips) and updated payment to a credit card that's been picking up overflow expenses (car repairs, tires and oil changes, new toilet, things like that). I took the girls shopping for spring clothes, especially Babygirl, who had nothing that fit her at all. I caught up the outstanding dental balance and have enough to pay for Boo'sMom's college class.
We aren't behind on anything. Gas/electric/phone all current. Mortgage up to date. There is plenty of food in the cupboard and Babygirl's lunch account has plenty.
We started this adventure with a pretty solid emergency fund. There's a couple hundred left. And we are certainly going to qualify for the medical deductible this year between the mileage (23 cents a mile!), the bills, and my lower salary.
I have $33 in my checkbook until payday next week, a tank full of gas thanks to a friend's supermarket discount card, and enough cash to get us back and forth to Philly again because someone in my church handed me an envelope with $100 in it. And best of all, I have a gift certificate for a massage.
God is good, all the time.
DeeDee
Tuesday, April 24, 2012
Out of School Again....
When we went to see the doctor yesterday, we discovered that Babygirl's white blood cell (WBC) count is very low. More importantly, she is neutropenic (critically short on neutrophils, the WBC's that fight bacterial infections). Since her meds already make it hard for her to fight fungi and parasites, taking out yet another arm of her immune system is a very, very bad idea.
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
Monday, April 23, 2012
Jorge......
When we arrived at the doctors' office this morning they had a letter waiting for us from our donor's family.
"For you, that received a gift from Jorge:
Through this letter we want to express that even with the painful experience of having lost our son, we are pleased that you received his precious gifts, because now you can now have a second chance of life.
Jorge was a boy very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy. And we hope that all these features are in your life, so he not only gave you one gift but all of these too.
With love,
Jorge's parents
PS If you want to know more about Jorge or to communicate with us, you are welcome."
They enclosed a picture. He was a handsome young man, with curly dark hair and eyes that spectacular yellow-brown that people try to imitate with contact lenses. A sweet smile. Beautiful eyebrows.
I haven't written yet to thank his parents and I'm not sure why. I'm glad now that I haven't - we were told Babygirl's donor was a young woman, so his parents would have wondered if we sent the letter to the right place.
I want to send them an entire photo album, the whole story, a link to this blog and an invitation to dinner. I want to tell them all about Babygirl and how her life has improved because of the gift Jorge gave her. I want her story to make it all all right for them....and I know it can't. It can't possibly. As sad as I have been for them, I'm immeasurably sadder now that I can SEE what they have lost, and it's still NOTHING at all compared to their suffering. Babygirl is all of the things Jorge was: "very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy." And by the grace of God and the miracle of Jorge's gift, she is still here with us.
Of COURSE I want to know more about Jorge. I want to hear anything they want to tell me about him, his hopes, his dreams, his gifts and talents. I want too let them know that he won't be forgotten, ever. Ever.
I read the letter to Babygirl, and showed her the picture, and suddenly it clicked in her mind. "He's dead?" "Yes, baby. His mom and dad knew he was going to die and decided to donate his organs to people like you who need them." "That's sad!" "Yes. Yes it is."
It's a lot for a 12 year old to take in. I'm not sure it's all there yet. And truly, when all is said and done, how can any of us understand it all?
DeeDee
"For you, that received a gift from Jorge:
Through this letter we want to express that even with the painful experience of having lost our son, we are pleased that you received his precious gifts, because now you can now have a second chance of life.
Jorge was a boy very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy. And we hope that all these features are in your life, so he not only gave you one gift but all of these too.
With love,
Jorge's parents
PS If you want to know more about Jorge or to communicate with us, you are welcome."
They enclosed a picture. He was a handsome young man, with curly dark hair and eyes that spectacular yellow-brown that people try to imitate with contact lenses. A sweet smile. Beautiful eyebrows.
I haven't written yet to thank his parents and I'm not sure why. I'm glad now that I haven't - we were told Babygirl's donor was a young woman, so his parents would have wondered if we sent the letter to the right place.
I want to send them an entire photo album, the whole story, a link to this blog and an invitation to dinner. I want to tell them all about Babygirl and how her life has improved because of the gift Jorge gave her. I want her story to make it all all right for them....and I know it can't. It can't possibly. As sad as I have been for them, I'm immeasurably sadder now that I can SEE what they have lost, and it's still NOTHING at all compared to their suffering. Babygirl is all of the things Jorge was: "very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy." And by the grace of God and the miracle of Jorge's gift, she is still here with us.
Of COURSE I want to know more about Jorge. I want to hear anything they want to tell me about him, his hopes, his dreams, his gifts and talents. I want too let them know that he won't be forgotten, ever. Ever.
I read the letter to Babygirl, and showed her the picture, and suddenly it clicked in her mind. "He's dead?" "Yes, baby. His mom and dad knew he was going to die and decided to donate his organs to people like you who need them." "That's sad!" "Yes. Yes it is."
It's a lot for a 12 year old to take in. I'm not sure it's all there yet. And truly, when all is said and done, how can any of us understand it all?
DeeDee
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