We've learned from an MRI that Ben has suffered brain damage in both hemispheres. What precisely this means for his longterm prognosis is yet to unfold. What's certain is that he'll require longterm rehabilitation.
Although discouraging, this news of brain damage does not cheapen the miracle of Ben's experience one bit for me. He is alive! His miracle is a miracle of survival. We're in this with Ben for the long haul.
Yesterday Ben said his head was swimming and that he felt like he was drowning. Quite poetic and astute, I think. Poor thing is so confused. Yet he's where he needs to be with expert medical care, surrounded by people who love him. I hope when he breaks through the water and comes to the surface that his outlook will be brighter than ever before.
Because of Ben's various treatments and his need to rest we, with the hospital staff, ask that people respect the ICU's policy of family visitors. But please, please, please send your uplifting messages that we can read to Ben when we visit him. We know there are so many people out there who love him too.
There's power in positive thinking.
Jenni
Thursday, July 31, 2008
Wednesday, July 30, 2008
Day 8: The talk of the town
Ben is talking!When I walked into his hospital room this afternoon Ben glanced up and matter-of-factly told the nurse, "This is my sister." I was floored. His progress defies explanation.
He is tired, groggy, frustrated, tired, weak, impatient and -- did I mention it? -- tired. Yet what a trooper! He tried to smile a bit for me in this photo today. Curse those dim hospital rooms, they never have enough natural light. Ben's eyelids balked at the flash every time, but I love the look of determination this photo captures.
Nurses, be warned! The whole visit Ben kept saying, "Let's go . . . Let's get out of here . . . Help me get up." I don't think he understands the magnitude of his condition right now, nor his limitations. He still is a very sick young man. Maybe he will be spared the complete realization of this until the time when both his body and mind are healthy. What a story we'll have to tell him then. For now, my prayers will include a new request that Ben can be granted an extra measure of patience to endure his physical recovery.
As you can see from the photo, Ben does not have a ventilator tube, just the oxygen line in his nose. His breathing today was shallow and rapid, sometimes reaching 40 breaths per minute. Nurses want it in the 12-25 breaths range. With coaching, Ben can take deeper breaths.
Today Ben had a nutrient drink. He worked with a physical therapist to try to stand, and with an occupational therapist to sit up at the edge of his bed. These two specialists will work with him daily.
His high temperature is still a concern. It responds to Tylenol, suggesting that the fever is not due to his body's inability to regulate temperature, but rather because of some "mystery bug." So Ben is also receiving antibiotics.
Ben wiggled his toes today when the neurologist asked him to. It took dogged persistence, I could see, but Ben did it.
He also told this doctor, "I feel a billion times better." So do we as Ben's family. Thank you for all of your love and prayers. Our hearts are full of gratitude.
Tuesday, July 29, 2008
Miracles happen
We are witnessing miracles, my mom says. When asked today to grip Mom's hand if he could hear her, Ben squeezed her fingers. Dad asked Ben to open his eyes in response to a question. Ben's pulsing eyelids revealed his effort, but when he just couldn't do it, he instead clasped his hands together and lifted them as a different affirmative sign.
Ben now has a strong breathing pattern on his own. He has been on a ventilator since Wednesday, one that essentially filled in the gaps when he wasn't taking strong enough breaths or enough of them. If he can keep up this effective breathing he's on schedule to have the ventilator removed.
A second EEG was done Monday. It still showed abnormal brain wave activity but is an improvement over the EEG performed last Thursday. Ben's boss pointed out, though, that we all know Ben is wired differently! And don't even get my family started on references to the movie Young Frankenstein. "Just whose brain did you get?" "Uh, Abby someone?"
Ben has tried to sit up. I mentioned yesterday that nurses had to restrain his left arm. Now they've followed suit with the right. Otherwise Ben would most likely get his way and tug at all the wires and tubes that seemingly annoy him.
I like this show of will. It reminds me of when my daughter was born 10 years ago as a preemie, and how heartened we were when in the early moments she resisted all the poking and prodding. Even if the neonatalogist labeled her a "snot" for doing so.
I can't help thinking of that time in our lives; we celebrated Emma's birthday the day before Ben was hospitalized. In fact, because the hospital's departments have shifted, she was born in the very corridor where Ben now heals. Emma's birth was a time when we felt the power of prayer. To be feeling so many of the same emotions in such close proximity has alternately drained and bolstered me. Mostly though I recognize the same feeling of comfort and support from our Father in Heaven. I continue to pray for another miracle.
Jenni
Ben now has a strong breathing pattern on his own. He has been on a ventilator since Wednesday, one that essentially filled in the gaps when he wasn't taking strong enough breaths or enough of them. If he can keep up this effective breathing he's on schedule to have the ventilator removed.
A second EEG was done Monday. It still showed abnormal brain wave activity but is an improvement over the EEG performed last Thursday. Ben's boss pointed out, though, that we all know Ben is wired differently! And don't even get my family started on references to the movie Young Frankenstein. "Just whose brain did you get?" "Uh, Abby someone?"
Ben has tried to sit up. I mentioned yesterday that nurses had to restrain his left arm. Now they've followed suit with the right. Otherwise Ben would most likely get his way and tug at all the wires and tubes that seemingly annoy him.
I like this show of will. It reminds me of when my daughter was born 10 years ago as a preemie, and how heartened we were when in the early moments she resisted all the poking and prodding. Even if the neonatalogist labeled her a "snot" for doing so.
I can't help thinking of that time in our lives; we celebrated Emma's birthday the day before Ben was hospitalized. In fact, because the hospital's departments have shifted, she was born in the very corridor where Ben now heals. Emma's birth was a time when we felt the power of prayer. To be feeling so many of the same emotions in such close proximity has alternately drained and bolstered me. Mostly though I recognize the same feeling of comfort and support from our Father in Heaven. I continue to pray for another miracle.
Jenni
Monday, July 28, 2008
Good news!
I begin this blog on a high note, with the news that Ben has briefly opened his eyes and lifted his arms. These developments, though small, brought hope to my heart when I sorely needed it. I learned of these events through a joyful play-by-play my mom left on my answering machine Sunday afternoon. "Are you ready for some good news?" she began. I surely was. I will never erase this message. I've already replayed it several times, remembering my tearful, happy gasp at her words. Ben opened his eyes! He lifted his arms!
So far, though, there's another phone message that I haven't yet erased -- the much sadder one that began this whole saga.
This message, too, was left by my mother. Sit down, she said. Ben is in Intensive Care at St. Mark's Hospital. He's in a coma.
It was Wednesday, July 23. We learned that Ben had taken too many pills of perhaps too many prescriptions. He had pressure sores on his feet and back when paramedics responded, suggesting he'd passed out and been in one position for many hours before, compromising blood flow. His breathing was shallow. His liver and kidneys were failing. White blood counts showed some sort of infection, and his heart raced.
What a difference five days can make.
Today, Monday, July 28, Ben brings his left arm (he's a southpaw, you know) toward the ventilator tube or monitor wires. His movements are so purposeful, nurses have taken to restraining him so he won't pull something out! He "acts properly annoyed," says one nurse, grimacing when his teeth are swabbed, scowling at the insertion of a feeding tube.
Dad's voice prompted that wonderful eye movement on Sunday. Of course we all want Ben to open his eyes for us too. I'm happy thinking that the fluttering of his eyelids when I talked to him later that night was a valiant try for such a tired, weak body. (Besides, that net of dark eyelashes must be heavy!) Still, Ben could visually track the source of Jeff's voice when his eyelid was lifted. He also blinks in response to bright lights.
Ben's temperature is doing better, as is his heart rate. He's sporting some pretty awesome pressure stockings and furry booties to help with blood flow and muscle position. He undergoes daily dialysis.
Now knowing that Ben has taken baby steps makes it easier -- but maybe only slightly -- for me to process this all. Ben has a long way to go, I know. My feelings are very tender. Some I can't even deal with right now. I've never thought I could go through so many emotions in such a compressed time.
I'll let my family chime in as they're able, but I think I can safely speak for all of them when I say we have felt so buoyed and loved through this experience. Thank you, all of our fellow Ben fans, for your support. We know without a shadow of a doubt that Heavenly Father loves Ben because we feel His love for us.
I encourage you to check this blog for updates on Ben's condition. Please feel free to leave a comment, to share a joke, a poignant story, or words dear to your heart. We value your support more than you'll ever know.
Help us write a wonderful story for Ben to read soon.
Love,
Jenni
So far, though, there's another phone message that I haven't yet erased -- the much sadder one that began this whole saga.
This message, too, was left by my mother. Sit down, she said. Ben is in Intensive Care at St. Mark's Hospital. He's in a coma.
It was Wednesday, July 23. We learned that Ben had taken too many pills of perhaps too many prescriptions. He had pressure sores on his feet and back when paramedics responded, suggesting he'd passed out and been in one position for many hours before, compromising blood flow. His breathing was shallow. His liver and kidneys were failing. White blood counts showed some sort of infection, and his heart raced.
What a difference five days can make.
Today, Monday, July 28, Ben brings his left arm (he's a southpaw, you know) toward the ventilator tube or monitor wires. His movements are so purposeful, nurses have taken to restraining him so he won't pull something out! He "acts properly annoyed," says one nurse, grimacing when his teeth are swabbed, scowling at the insertion of a feeding tube.
Dad's voice prompted that wonderful eye movement on Sunday. Of course we all want Ben to open his eyes for us too. I'm happy thinking that the fluttering of his eyelids when I talked to him later that night was a valiant try for such a tired, weak body. (Besides, that net of dark eyelashes must be heavy!) Still, Ben could visually track the source of Jeff's voice when his eyelid was lifted. He also blinks in response to bright lights.
Ben's temperature is doing better, as is his heart rate. He's sporting some pretty awesome pressure stockings and furry booties to help with blood flow and muscle position. He undergoes daily dialysis.
Now knowing that Ben has taken baby steps makes it easier -- but maybe only slightly -- for me to process this all. Ben has a long way to go, I know. My feelings are very tender. Some I can't even deal with right now. I've never thought I could go through so many emotions in such a compressed time.
I'll let my family chime in as they're able, but I think I can safely speak for all of them when I say we have felt so buoyed and loved through this experience. Thank you, all of our fellow Ben fans, for your support. We know without a shadow of a doubt that Heavenly Father loves Ben because we feel His love for us.
I encourage you to check this blog for updates on Ben's condition. Please feel free to leave a comment, to share a joke, a poignant story, or words dear to your heart. We value your support more than you'll ever know.
Help us write a wonderful story for Ben to read soon.
Love,
Jenni
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