One of the most disturbing news stories I've read lately is about the woman who was walking down the beach holding her baby above her head. Eventually she simply heaved her baby into the ocean. Luckily for the baby, bystanders saw it happen and went into the water to the rescue. Another recent article spoke of a baby found alive after being abandoned in a trash bag. There are hundreds of such stories, and many have far unhappier endings.
I thank God that I have never been there. But I have heard some unimaginably horrible stories, so unspeakable that if you look at it from the mother's perspective, death becomes a way of protecting a child from a fate truly far worse: A loving if misguided choice.
We, who have been surrounded by the knowledge of love since our birth, either by the actions of our parents, the love of a grandparent, the grace of a church or the blessed kindness of a teacher sometimes forget what that knowledge has given us in terms of our personal security and mental health. Despite the limits of the love of the people in our lives we have, at least, made a connection with the Divine Love possible. Most of us have absolutely no grasp of the level of desperation or hopelessness that would lead a mother to make such choices.
Do not think that I am in any way supporting the murder of children. It is unthinkable. But I want you to think, for a moment, about the love that HAS been gifted to you. Imperfect, difficult, amazing, wonderful, healing, hurting, kindhearted, generous - flawed as all human love has been. I cannot express how grateful I am for this love. And now think of how much MORE the Great Giver of all Love has given you. Gratitude multiplies.
How do we show that love to the unloved? Do we stand in cold, unloving judgment of the choices of others or do we show them the kind forgiving grace that Love has shown us?
DeeDee
Monday, November 3, 2014
Sunday, November 2, 2014
For the Glory of the Skies....
Citygirl and I have a 'song': "I Hope You Dance" by Lee Ann Womack. It's beautiful (You can see the video here: https://www.youtube.com/watch?v=RV-Z1YwaOiw) One of my favorite lines is: "Give the heavens above more than just a passing glance."
When she was little, we were always looking at the sky. Somehow, there was always something interesting going on. In her childhood we had comets Hyakutuke and Hale-Bopp, and Haley's besides. We had lunar eclipses, a solar eclipse, and a summer when all the easily visible planets lined up in a row on the horizon just in time for us to see them at the beach.
We used to lay in the dark on the thyme-scented hill of our favorite campground staring at the star-filled sky until we were sure we could feel the earth rotating beneath us. I put glow-in-the-dark stars on her ceiling with Cassiopeia's chair and Orion and the Big Dipper.
Hubby and I once took all the children to the top of a hill to watch a meteor shower in the middle of the night, all bundled up in sleeping bags against the late-fall cold.
It is too easy to look down, to have our spirits and souls drawn downward by life and care and sorrow and bitterness. It is harder to remember to look up, to give more than just a passing glance to the beauty of the sky, the clouds, the sunset, the stars, and be grateful.
DeeDee
When she was little, we were always looking at the sky. Somehow, there was always something interesting going on. In her childhood we had comets Hyakutuke and Hale-Bopp, and Haley's besides. We had lunar eclipses, a solar eclipse, and a summer when all the easily visible planets lined up in a row on the horizon just in time for us to see them at the beach.
We used to lay in the dark on the thyme-scented hill of our favorite campground staring at the star-filled sky until we were sure we could feel the earth rotating beneath us. I put glow-in-the-dark stars on her ceiling with Cassiopeia's chair and Orion and the Big Dipper.
Hubby and I once took all the children to the top of a hill to watch a meteor shower in the middle of the night, all bundled up in sleeping bags against the late-fall cold.
It is too easy to look down, to have our spirits and souls drawn downward by life and care and sorrow and bitterness. It is harder to remember to look up, to give more than just a passing glance to the beauty of the sky, the clouds, the sunset, the stars, and be grateful.
DeeDee
Saturday, November 1, 2014
For the Beauty of the Earth....
November has Thanksgiving Day in it, so it's become something of a blogger tradition to try an create a month of gratitude blogs. Blogging daily is very challenging. Being grateful is very challenging. Doing both at the same time can be monumental. I'll do my best to keep them simple, and confess right here that some were at least outlined a little in advance. Sitting in a hospital in the dark with a sleeping teen gives you a certain amount of grace time.
On my most recent drives to and from Philadelphia I experienced a change of seasons. At home, fall is nearly over. The hills have hints of russet and grey, with a tiny bit of yellow and the remaining evergreens. There is a muted beauty to the look of late fall and early winter.
As I drove south, the early-winter look fades and mid-fall returns. Reds and oranges and yellows reappear, dazzling corridors of color against blue skies. In less than 48 hours I went winter-fall-winter-fall, each time blessed by the beauty of transformation.
Our lives are chaos, certainly. Very little is harder than sitting next to a sick child in a hospital, hoping that things get better. Lifting my eyes to the beauty of the world around me helps me remember that transformation is all around me, and I am grateful.
DeeDee
On my most recent drives to and from Philadelphia I experienced a change of seasons. At home, fall is nearly over. The hills have hints of russet and grey, with a tiny bit of yellow and the remaining evergreens. There is a muted beauty to the look of late fall and early winter.
As I drove south, the early-winter look fades and mid-fall returns. Reds and oranges and yellows reappear, dazzling corridors of color against blue skies. In less than 48 hours I went winter-fall-winter-fall, each time blessed by the beauty of transformation.
Our lives are chaos, certainly. Very little is harder than sitting next to a sick child in a hospital, hoping that things get better. Lifting my eyes to the beauty of the world around me helps me remember that transformation is all around me, and I am grateful.
DeeDee
Friday, October 31, 2014
Back in the Light...
Two adorable Ninjas just left my house:
Now I'm being inundated by little Elsa's.
It's good to be home.
Babygirl is still headache free, and she an I spent much of the day outdoors, without sunglasses, raking leaves and tearing down the garden. We harvested 30 pounds of green tomatoes. We found some lettuce hiding beneath them, one lonely cucumber clinging to the dead vines, and a dozen peppers. There are still herbs, kale, and broccoli out there but they are all frost tolerant ones.
I'm exhausted. Nearly 800 miles of driving, four nights in beds that aren't my own (two on a pull out chair smaller in width than the average coffin and likely less comfortable). Three nights with a kid who was so overhydrated that she needed to get up at least once an hour, unplugging the IV pole (conveniently plugged in directly above my head for one night). One night with the IV beeping every half hour. Loudly. I think it might be kinder to just keep someone up all night than to let them think they just might get some sleep.
It was worth it. It was worth it to see the nurses and doctors suddenly see my Babygirl emerge from under the blankets, out of the dark, into the land of the conversant and confident.
And I have to tell you, being in a place that 'gets' what it's like to have a headache is amazing. NO one comes in loudly. NO one comes in and flips on a light, ever. The dimmer switches were an awesome, amazing thing, making it possible to go gently from dark to light as tolerated. And having window blinds that allow you to let in only as much light as you can bear is a gift beyond price. Babygirl has been living in the dark with her headache for the better part of 6 weeks.
Praise be to God for the Light.
DeeDee
Now I'm being inundated by little Elsa's.
It's good to be home.
Babygirl is still headache free, and she an I spent much of the day outdoors, without sunglasses, raking leaves and tearing down the garden. We harvested 30 pounds of green tomatoes. We found some lettuce hiding beneath them, one lonely cucumber clinging to the dead vines, and a dozen peppers. There are still herbs, kale, and broccoli out there but they are all frost tolerant ones.
I'm exhausted. Nearly 800 miles of driving, four nights in beds that aren't my own (two on a pull out chair smaller in width than the average coffin and likely less comfortable). Three nights with a kid who was so overhydrated that she needed to get up at least once an hour, unplugging the IV pole (conveniently plugged in directly above my head for one night). One night with the IV beeping every half hour. Loudly. I think it might be kinder to just keep someone up all night than to let them think they just might get some sleep.
It was worth it. It was worth it to see the nurses and doctors suddenly see my Babygirl emerge from under the blankets, out of the dark, into the land of the conversant and confident.
And I have to tell you, being in a place that 'gets' what it's like to have a headache is amazing. NO one comes in loudly. NO one comes in and flips on a light, ever. The dimmer switches were an awesome, amazing thing, making it possible to go gently from dark to light as tolerated. And having window blinds that allow you to let in only as much light as you can bear is a gift beyond price. Babygirl has been living in the dark with her headache for the better part of 6 weeks.
Praise be to God for the Light.
DeeDee
Wednesday, October 29, 2014
The DHE Miracle....
They've run a ton of crap through that little IV. Saline. Methylprednisilone. Reglan. Benadryl. Depakote. And finally, this afternoon, DHE.
They had considerable trepidation about using this drug.
Dihydroergotamine is an derived from an old, old drug. Ergot alkaloids have been in use since the cavemen discovered them in fungi growing on rye seeds (http://en.wikipedia.org/wiki/Ergot). Historically they were used to induce labor, and to treat severe headaches. Because the sumatriptan caused her to have chest pain, and ergot can cause similar side effects for similar (frightening) reasons, there were concerns that there might be some underlying cardiac issues (oh for the love of all that's holy look at the kid's chart! she's had TWO full negative cardiac workups in less than 3 years, the last less than 6 months ago), so they had to call cardiology. Nephrology had already cleared the drug, so once we got the final go ahead, they put it up.
Within an hour she was headache free. The sunglasses are off, the lights are on, and she's getting restless and actually having conversations. They are hanging another dose at midnight, and reassessing the situation in the morning.
Headache free is a blessing. It isn't out of the woods, exactly, but it's a good start.
DeeDee
PS Oh, and the medical student did manage to make a fool of himself on rounds. I did my best not to point it out but the attending neurologist was not so kind, poor kid. Ah, I do not miss those days at all.
They had considerable trepidation about using this drug.
Dihydroergotamine is an derived from an old, old drug. Ergot alkaloids have been in use since the cavemen discovered them in fungi growing on rye seeds (http://en.wikipedia.org/wiki/Ergot). Historically they were used to induce labor, and to treat severe headaches. Because the sumatriptan caused her to have chest pain, and ergot can cause similar side effects for similar (frightening) reasons, there were concerns that there might be some underlying cardiac issues (oh for the love of all that's holy look at the kid's chart! she's had TWO full negative cardiac workups in less than 3 years, the last less than 6 months ago), so they had to call cardiology. Nephrology had already cleared the drug, so once we got the final go ahead, they put it up.
Within an hour she was headache free. The sunglasses are off, the lights are on, and she's getting restless and actually having conversations. They are hanging another dose at midnight, and reassessing the situation in the morning.
Headache free is a blessing. It isn't out of the woods, exactly, but it's a good start.
DeeDee
PS Oh, and the medical student did manage to make a fool of himself on rounds. I did my best not to point it out but the attending neurologist was not so kind, poor kid. Ah, I do not miss those days at all.
Tuesday, October 28, 2014
Coctail Via IV.....
After making the 384 mile round trip to and from CHOP Sunday and Monday, I got up and checked on Babygirl this morning, hoping against hope that she'd be all ready for school.
Not so much.
The headache recurred at about one AM, meaning that she got less than 12 hours of relief from a procedure that I'm willing to bet we'll pay over $500 for.
Did I mention that her Medicare is up this month? Yeah, pretty sure.
Rather than wake me so we could start rolling back to Philly on 2 hours of sleep (sensible child) she waited until I got up. I cleared some work while I had a quick breakfast and hit the road. At 8:30 I called (hands free!) to let Philly know we were on our way, ETA about noon.
We got a bed on the neuro floor, a new place for us. The nurses were not at all put off by the sunglasses, the room lights are all on dimmers, and the window shades are adjustable up to three layers thick.
The neuro fellow is a Dr Christian, who, if the scar on his neck is any indication, has been in the fellowship of suffering himself a time or two. His third-year (translation: freshly-hatched) medical student was about 3 steps above average and managed not to make a fool of himself even once.
That being said, she is a significant anomaly on this floor. They simply do not know what to do about the transplant and are, thankfully, tripping over themselves being hypervigilant about it. It took until 5:30 to start the first of what I think will be a graduated run of 6 different medications aimed at breaking the headache.
I'm sure they'll succeed.
What I'm not sure about is how they plan on keeping it gone. And to judge by the looks on their faces when I pose this question, I'm guessing that this is not the first time they've been up against this. And they don't likely have any really easy answers.
DeeDee
Not so much.
The headache recurred at about one AM, meaning that she got less than 12 hours of relief from a procedure that I'm willing to bet we'll pay over $500 for.
Did I mention that her Medicare is up this month? Yeah, pretty sure.
Rather than wake me so we could start rolling back to Philly on 2 hours of sleep (sensible child) she waited until I got up. I cleared some work while I had a quick breakfast and hit the road. At 8:30 I called (hands free!) to let Philly know we were on our way, ETA about noon.
We got a bed on the neuro floor, a new place for us. The nurses were not at all put off by the sunglasses, the room lights are all on dimmers, and the window shades are adjustable up to three layers thick.
The neuro fellow is a Dr Christian, who, if the scar on his neck is any indication, has been in the fellowship of suffering himself a time or two. His third-year (translation: freshly-hatched) medical student was about 3 steps above average and managed not to make a fool of himself even once.
That being said, she is a significant anomaly on this floor. They simply do not know what to do about the transplant and are, thankfully, tripping over themselves being hypervigilant about it. It took until 5:30 to start the first of what I think will be a graduated run of 6 different medications aimed at breaking the headache.
I'm sure they'll succeed.
What I'm not sure about is how they plan on keeping it gone. And to judge by the looks on their faces when I pose this question, I'm guessing that this is not the first time they've been up against this. And they don't likely have any really easy answers.
DeeDee
Monday, October 27, 2014
Nerve Blocks.....
After two years of headaches that range from annoying to unrelenting neurology finally called us down to try nerve blocks to break the most recent run.
Nerve blocks are basically the application of a local anaesthetic to a nerve, like when your dentist numbs a tooth. You can do small area, or a really big one depending on the nerve you are aiming for. Epidural anaesthesia is one form of nerve block, and in that case you can hit up to 10 nerves at a time, numbing everything from the waist down, or just one nerve, numbing part of one leg. I wasn't entirely sure what they were going to be aiming for here.
They offered a sedative ahead of time (and finally got it phoned into the CVS nearest my sister-in-law's house). I was quite surprised by the dose: Ativan at 2 milligrams is pretty hefty. I order 0.5 mg to sedate a grownup, but hey, maybe they know something about how badly these shots upset a kid, so I give her the pill as we are leaving for downtown. By the time we arrived at CHOP she was drowsy and more than a little cranky. The nurse went through the risk/benefit talk, and explained that we don't know how or why it works. I responded that at this point it doesn't much matter if they come in with grass skirts burning incense and waving maracas. I need Babygirl better.
The doc explained the process and asked her where the pain was. Since it was all in the back of her head, that was where the shots were to go: Four of them, each with one injection to be fanned out under the skin. Then the doc started looking for anatomical landmarks.
Take a moment and feel the back of your head, where the neck meets your skull. The bones behind your ears rise up and meet above the center of the neck, and there's a bump on the back of your skull like the keystone of an arch. Locating the nerves is done by touch, based on these landmarks.
Babygirl doesn't have them.
When she was born in Guatemala, her mom knew that she wasn't going to be able to raise her. She had already had one baby, and he was being raised by his father's parents. She didn't want her Babygirl to go the US adoption agencies and leave the country, so she gave her to a local family. She came back a few months later to see her, and found Babygirl lying on her back, starving and nearly dead. With no remaining choices, she took her back and went to the agencies. Most of them turned her away because they thought Babygirl was too far gone to save, but one agency took a chance, put her in the hospital, fed her up, and she ended up becoming MY Babygirl. But one result of this history is that the back of her skull is completely flat.
It made the neurologist's day more challenging. He figured it out.
Her scalp completely numb, she lay down and fell asleep for two hours. When she woke up she was hungry, thirsty, high as a kite and some teen-girl place far beyond cranky. The first time she stood up she would have fallen down if there hadn't been a chair behind her.
The doc discharged us. We are to come back for admission if she gets a headache again this week. Aside from that, what happens next is anyone's guess. Nerve blocks work not at all, immediately, for a few hours, for a few days, for months, no one knows in any one patient.
Watching Babygirl try to select coffee was entertaining. We had to go through the line twice for her to make up her mind and she was purely evil. It was a relief to have her pass out in the car, so I drove all the way home without stopping.
It took a leap of faith to even consider leaving Philly without being sure she wouldn't have another headache. But...what it she wakes up tomorrow without one finally and can go to school? I have to have her here. Hope is thin, but it's hope nonetheless.
DeeDee
Nerve blocks are basically the application of a local anaesthetic to a nerve, like when your dentist numbs a tooth. You can do small area, or a really big one depending on the nerve you are aiming for. Epidural anaesthesia is one form of nerve block, and in that case you can hit up to 10 nerves at a time, numbing everything from the waist down, or just one nerve, numbing part of one leg. I wasn't entirely sure what they were going to be aiming for here.
They offered a sedative ahead of time (and finally got it phoned into the CVS nearest my sister-in-law's house). I was quite surprised by the dose: Ativan at 2 milligrams is pretty hefty. I order 0.5 mg to sedate a grownup, but hey, maybe they know something about how badly these shots upset a kid, so I give her the pill as we are leaving for downtown. By the time we arrived at CHOP she was drowsy and more than a little cranky. The nurse went through the risk/benefit talk, and explained that we don't know how or why it works. I responded that at this point it doesn't much matter if they come in with grass skirts burning incense and waving maracas. I need Babygirl better.
The doc explained the process and asked her where the pain was. Since it was all in the back of her head, that was where the shots were to go: Four of them, each with one injection to be fanned out under the skin. Then the doc started looking for anatomical landmarks.
Take a moment and feel the back of your head, where the neck meets your skull. The bones behind your ears rise up and meet above the center of the neck, and there's a bump on the back of your skull like the keystone of an arch. Locating the nerves is done by touch, based on these landmarks.
Babygirl doesn't have them.
When she was born in Guatemala, her mom knew that she wasn't going to be able to raise her. She had already had one baby, and he was being raised by his father's parents. She didn't want her Babygirl to go the US adoption agencies and leave the country, so she gave her to a local family. She came back a few months later to see her, and found Babygirl lying on her back, starving and nearly dead. With no remaining choices, she took her back and went to the agencies. Most of them turned her away because they thought Babygirl was too far gone to save, but one agency took a chance, put her in the hospital, fed her up, and she ended up becoming MY Babygirl. But one result of this history is that the back of her skull is completely flat.
It made the neurologist's day more challenging. He figured it out.
Her scalp completely numb, she lay down and fell asleep for two hours. When she woke up she was hungry, thirsty, high as a kite and some teen-girl place far beyond cranky. The first time she stood up she would have fallen down if there hadn't been a chair behind her.
The doc discharged us. We are to come back for admission if she gets a headache again this week. Aside from that, what happens next is anyone's guess. Nerve blocks work not at all, immediately, for a few hours, for a few days, for months, no one knows in any one patient.
Watching Babygirl try to select coffee was entertaining. We had to go through the line twice for her to make up her mind and she was purely evil. It was a relief to have her pass out in the car, so I drove all the way home without stopping.
It took a leap of faith to even consider leaving Philly without being sure she wouldn't have another headache. But...what it she wakes up tomorrow without one finally and can go to school? I have to have her here. Hope is thin, but it's hope nonetheless.
DeeDee
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