While on the Amtrak train from Rochester, MN to Chicago this morning I burst out laughing. I started thinking about how irritated my dad is going to be when he wakes up.
We have specific routines at home, and everything in his world is done with a system, exerting as little effort as possible (he's not lazy, he's just got his own brand of "efficient"). The lights are at a certain brightness, the coffee comes on at a certain time, and the pillows in dad's recliner sit a certain way, otherwise his back hurts and he gets irritated. This miraculous, cinematic moment when my father comes out of his current fog of a state will be about 2 seconds long. He'll then notice all the stuff sticking to him, and feel the stiffness of sitting in the same position for who knows how long. While Mom and I weeping and praising all the powers above, Dad will look around and say, "What in the Sam Hill is going on in the M*&@^D(&!#$.......GLORIA!!!!!"
This moment equally cracks me up and comforts me, because I know it will happen. He's in great shape today. The nurses reduced his pain medication today and guess what? More wiggling. Peggy's been his day nurse for 3 days in a row now, and she's learning the groove of Mom's series of questions. The resp staff added more moisture to his breathing equipment so his intake isn't drying him out as much as before. His levels jumped a bit while they were working on hm, but were back to normal after he'd had time to rest.
Rest. Hopefully Mom will get some of that tonight. Heck, maybe I will too.
Friday, November 20, 2009
Thursday, November 19, 2009
Thursday, 11/19: Baby Steps
Today is good for Pops- steady pressures, more independent breathing. The staff felt it safe to remove his EVD (the tube draining the excess fluid off his brain) because he's been able to regulate the pressure all on his own. Plus, his brain's not producing enough fluid from the swelling to really justify it being there anymore. This is a good thing.
Mom's been meeting more with doctors and asking more questions. She's getting much bolder in her approach with the nurses, especially the ones she feels aren't paying attention to her concerns. She gave me a list of 2 nurses and 1 MD that she "doesn't like too much." If you know Mom, that's harsh. I'll spare their names to protect the, um, negligent?
We still see tiny improvements every day. Microscopic, even, but they're there. The nurses he had last week stop by and are shocked at his progress. I'm holding on to that.
I just finished up my singing commitment in Minneapolis, and it went as well as it possibly could have given the circumstances. I'm heading back to Chicago in the morning to cram for the next gig on Sunday. I'm physically here, but my entire heart and mind is on the 4th floor of that hospital in Little Rock. The nurses give me as much info as I ask for via phone, but it's simply not the same.
Mom's getting a picture of what would be most helpful to us, and in the coming days I'll broadcast it so you know how you can help. In the meantime, just do what we do: keep up the hope.
Mom's been meeting more with doctors and asking more questions. She's getting much bolder in her approach with the nurses, especially the ones she feels aren't paying attention to her concerns. She gave me a list of 2 nurses and 1 MD that she "doesn't like too much." If you know Mom, that's harsh. I'll spare their names to protect the, um, negligent?
We still see tiny improvements every day. Microscopic, even, but they're there. The nurses he had last week stop by and are shocked at his progress. I'm holding on to that.
I just finished up my singing commitment in Minneapolis, and it went as well as it possibly could have given the circumstances. I'm heading back to Chicago in the morning to cram for the next gig on Sunday. I'm physically here, but my entire heart and mind is on the 4th floor of that hospital in Little Rock. The nurses give me as much info as I ask for via phone, but it's simply not the same.
Mom's getting a picture of what would be most helpful to us, and in the coming days I'll broadcast it so you know how you can help. In the meantime, just do what we do: keep up the hope.
Wednesday, November 18, 2009
Wednesday, 11/18: The C Word
Dad's status hasn't changed much, except for one word.
The doctors used the word coma yesterday for the first time. His blood pressure's great, his inter-cranial pressure is rocking steady, he still has subtle, tiny movements. He breathes well above what his respirator's levels recommend, and he reacts to pain stimuli. But he's officially in a coma.
Part of me's glad; at least it has a name. But that name isn't necessarily one you want to hear. Ever. Not for the man responsible for half your DNA, the man who did silly dances with you in the living room, the man who taught you how to fix a toilet.
Mom is still charging on- she says he looks cute with his beard trimmed and his ipod on. She still meets with nurses and doctors, takes his levels, and waits for the reports on his status. That's the thing with these injuries- you just have to wait. And pray. And hope.
The doctors used the word coma yesterday for the first time. His blood pressure's great, his inter-cranial pressure is rocking steady, he still has subtle, tiny movements. He breathes well above what his respirator's levels recommend, and he reacts to pain stimuli. But he's officially in a coma.
Part of me's glad; at least it has a name. But that name isn't necessarily one you want to hear. Ever. Not for the man responsible for half your DNA, the man who did silly dances with you in the living room, the man who taught you how to fix a toilet.
Mom is still charging on- she says he looks cute with his beard trimmed and his ipod on. She still meets with nurses and doctors, takes his levels, and waits for the reports on his status. That's the thing with these injuries- you just have to wait. And pray. And hope.
Tuesday, November 17, 2009
Tuesday Morning, 11/17
It's been a week since the accident. I can't tell if it feel long or short.
Today's been stable and positive. Super-Nurse, the non-blinking Stacy, helped my mom press a doctor about an antibiotic that may be causing a curious rash dad's developed. We officially love her now.
Pressures are great. They've closed the brain drain for an extended period of time today, and he's rocking steady. Mom's also bought an mp3 player and will be loading it up with some of his favorite stuff. I'll be throwing my own classical voice recordings on there soon, because he'll recognize that too. What a playlist: Temptations, Creedence Clearwater Revival, Sam Cooke, an aria from Mozart's Don Giovanni.
We know that music will help dad, because it's always been a huge part of our lives. Mom's a music teacher, I work in the music and theater arts, and dad's very active in the church music. They were my first music history professors; we'd play "Who is it?" on the radio as a kid. We'd listed to the oldies station, and thanks to my dad, I knew every artist on the Motown record label by age 6. The day they chose to let me know that Marvin Gaye had already passed, I threw my 7-year-old self on my grandmother's bed and cried for an hour.
All in all, it's a good day. I plan on chatting with the nurse a little later today, and will let you all know more when I have it. In the meantime, turn on an oldies radio station and think a happy thought for my Dad. He'll feel it, I promise.
Today's been stable and positive. Super-Nurse, the non-blinking Stacy, helped my mom press a doctor about an antibiotic that may be causing a curious rash dad's developed. We officially love her now.
Pressures are great. They've closed the brain drain for an extended period of time today, and he's rocking steady. Mom's also bought an mp3 player and will be loading it up with some of his favorite stuff. I'll be throwing my own classical voice recordings on there soon, because he'll recognize that too. What a playlist: Temptations, Creedence Clearwater Revival, Sam Cooke, an aria from Mozart's Don Giovanni.
We know that music will help dad, because it's always been a huge part of our lives. Mom's a music teacher, I work in the music and theater arts, and dad's very active in the church music. They were my first music history professors; we'd play "Who is it?" on the radio as a kid. We'd listed to the oldies station, and thanks to my dad, I knew every artist on the Motown record label by age 6. The day they chose to let me know that Marvin Gaye had already passed, I threw my 7-year-old self on my grandmother's bed and cried for an hour.
All in all, it's a good day. I plan on chatting with the nurse a little later today, and will let you all know more when I have it. In the meantime, turn on an oldies radio station and think a happy thought for my Dad. He'll feel it, I promise.
Monday, November 16, 2009
Monday: Collective Sigh/Rough Parting
Salty Nurse no more!
Well, Stacy is still our evening nurse, but I'm pretty sure I misread her. Her bedside manner and delivery of news weren't syrupy sweet like the rest of our nurses so far, and that combined with the first dose of scary news made me nervous around her. Plus, I don't think she blinks. Ever. I've yet to see any in 2 12-hour shifts.
But after my standoff at the O.K. Kuh-Neuro yesterday morning, I got the answers I needed, which is to my non-blinking nurse's credit. She scared me enough to really get mad and fight. We had her again last night, and she was Super-Nurse. She got his spiking fever down, asked about my conversation with the neurologist, and -wait for it- JOKED around with me a little. Plus, she offered to trim Dad's beard. He really needed it. We don't need any more reasons to crack Rip Van Winkle jokes.
All silliness aside, she was/is wonderful, as have been all the other nurses.
Today was a great day for Dad. His pressures, both blood and brain, have been stable and slightly lower than the day before. He's breathing almost twice as much as the ventilator tells him to (A New Record!), and his oxygen delivery is stable. I believe the respiratory staff will try a CPap on him tonight or tomorrow for a few moments, just to see how he does. He's moving a bit more, and even if it's due to a silent coughing fit, I'll take it. It means A) he's getting the gunk out of his lungs and B) he's got the strength and energy to do it. Ah yes, and C) his whole body moves, most specifically his right arm which he swings like crazy. Why is this wonderful? It's controlled by the left brain, where his trauma is.
He wiggled his mouth the second I walked in to talk to him, which is awesome. He's getting quicker at his responses. I picked up his favorite cologne for both him and mom from home, and she'll be waving them under his nose over the coming days. Hey, it won't hurt him. And anything that triggers a sense memory is worth a shot.
Sadly, I won't be around to see if it works. I'm writing from Gate 11 at the L.R. airport. I'm back to Chicago/Minneapolis/Chicago for 8 days. It's already killing me to be away from them. I've refused to let him hear me cry so far, but today I fell off the wagon. God Bless my cousin Chuck for holding me while I got it out of my system. The nurses all understand that I'll be calling regularly for updates on his levels, and my physical distance from Room H405 won't mean a thing when it comes to me quizzing doctors. In fact, it may get worse. Hold on to your hats, residents.
For tonight, we're just enjoying how blessed we've been so far. He's improving tiny bits every single day. I'm so proud of him. And of Mom for being, well, herself. Upbeat, positive, loving. I feel in my soul that it's working.
Well, Stacy is still our evening nurse, but I'm pretty sure I misread her. Her bedside manner and delivery of news weren't syrupy sweet like the rest of our nurses so far, and that combined with the first dose of scary news made me nervous around her. Plus, I don't think she blinks. Ever. I've yet to see any in 2 12-hour shifts.
But after my standoff at the O.K. Kuh-Neuro yesterday morning, I got the answers I needed, which is to my non-blinking nurse's credit. She scared me enough to really get mad and fight. We had her again last night, and she was Super-Nurse. She got his spiking fever down, asked about my conversation with the neurologist, and -wait for it- JOKED around with me a little. Plus, she offered to trim Dad's beard. He really needed it. We don't need any more reasons to crack Rip Van Winkle jokes.
All silliness aside, she was/is wonderful, as have been all the other nurses.
Today was a great day for Dad. His pressures, both blood and brain, have been stable and slightly lower than the day before. He's breathing almost twice as much as the ventilator tells him to (A New Record!), and his oxygen delivery is stable. I believe the respiratory staff will try a CPap on him tonight or tomorrow for a few moments, just to see how he does. He's moving a bit more, and even if it's due to a silent coughing fit, I'll take it. It means A) he's getting the gunk out of his lungs and B) he's got the strength and energy to do it. Ah yes, and C) his whole body moves, most specifically his right arm which he swings like crazy. Why is this wonderful? It's controlled by the left brain, where his trauma is.
He wiggled his mouth the second I walked in to talk to him, which is awesome. He's getting quicker at his responses. I picked up his favorite cologne for both him and mom from home, and she'll be waving them under his nose over the coming days. Hey, it won't hurt him. And anything that triggers a sense memory is worth a shot.
Sadly, I won't be around to see if it works. I'm writing from Gate 11 at the L.R. airport. I'm back to Chicago/Minneapolis/Chicago for 8 days. It's already killing me to be away from them. I've refused to let him hear me cry so far, but today I fell off the wagon. God Bless my cousin Chuck for holding me while I got it out of my system. The nurses all understand that I'll be calling regularly for updates on his levels, and my physical distance from Room H405 won't mean a thing when it comes to me quizzing doctors. In fact, it may get worse. Hold on to your hats, residents.
For tonight, we're just enjoying how blessed we've been so far. He's improving tiny bits every single day. I'm so proud of him. And of Mom for being, well, herself. Upbeat, positive, loving. I feel in my soul that it's working.
Sunday, November 15, 2009
Sunday, 11/15, 2:30 pm
Last night was rough.
We've known since we got here that his head trauma was the primary concern. Our salty nurse mentioned a condition that she read in his records. She didn't say it was a diagnosis or suggestion or whatever, she just said she read the words. We had told her that none of the doctors had really spoken to us. She stared at me blankly and said "If it was my family, I'd demand to speak to the neurologist." She refused to say any more.
Mom left dad's room for a moment and I instantly grabbed my computer. It was 10 pm, I felt powerless, and all I could do was start researching. I remembered the condition and by the power vested in Google, I started to read. Then panic.
The condition she described will be left out of this discussion until I have a specific diagnosis from an MD, but it can be the most devastating of all brain traumas. Patients tend to live in a vegetative state, 90% never wake up, and those that do almost never regain full function. That's the worst of it. The milder forms can make an almost full recovery. Right now, we've got no idea where he may lie within that spectrum.
I fell apart. I sobbed into my blanket so dad wouldn't hear me. Mom came back in and I slammed my Mac shut. I couldn't bear to let her read it until I knew more. I made her get her pal Dr. Andy on the phone. He works with cardio, but I had a feeling he'd know something to help me rationalize the neuro. He did, I regrouped, and I took action.
Mom and I had a mini-conference outside the wing, then geared up for our fight. I walked back to our nurse and said that we'd be back at 3:30 am, and were not leaving his room until we spoke to a neurologist. She understood, and for the first time that night, showed compassion; she brought us 2 warm blankets.
The neurologist finally came through at 7 am. I was barely awake but angry enough to pull through it. I fired questions at him like an automatic weapon. He spoke in incredibly general terms, and I kept pushing. I needed to know if that condition was a diagnosis, a suggestion or a mere pondering. He told me it was one of a list of possibilities, none of which they were currently able to confirm. That oddly made me feel better.
We've now gotten a more realistic picture of where his brain function lies. We are exactly where we thought we were yesterday, just with a nervous curveball and shaken faith in the form of a gruff overnight nurse. Dad's got lots of contusions (bruises) on his left frontal area. That's an important one- it controls speech, movement, and some portions of memory. Surgery's not an option, nor should it be now, because removing any part of that eliminates any chance for healing itself.
According to the neurologist, the priority this week has been stabilization and reduction of swelling, which we knew. We have to ensure his other bodily functions are in tact (eg his kidneys don't fail) while his brain decides what it wants to do. He is no longer on any kind of sedative, so we do see some reactions to pain stimuli. Over the next 1-2 weeks, we should see an increase in responses in reaction and some independent action. I'm asking Santa to let my dad speak to me for Christmas.
I've got to get in line now to reserve 2 of the coveted family waiting room sleeping chairs for me and mom. She's driving back to her house to pick up clothes for the week, get the mail, and spend some time with our beloved dog Daisy. It's the first time she's left Little Rock since the accident.
So many of you ask what you can do to help. First, give care or concern for my father and family in whatever fits your belief system: prayer, candles, chants, voodoo, whatever. Second, check this site for updates. We can absolutely take phone calls as well, but this will probably be more concise. Third, if you'd like to visit, feel free, but keep in mind that no one is allowed in Dad's room between the hours of 6-8, am and pm. Odds are that if Mom leaves the building, she'll do it then. Of course, if you'd like to go with her to get coffee or dinner, that's also an option.
Once we're a little more comfortable with the groove of this place, I may put together a rotation of people to be here to relieve my mom. She's going to need to spend some time away from here to keep her sanity, but she can't bear to leave unless she knows someone's here to be with him. Keep that in the back of your minds until we get more comfortable with the idea.
I’m heading home to Chicago for a week tomorrow night. I’m not particularly ready to go yet, but Mom’s sending me back to take care of some business. Keep up the hope and faith, because I know we are. We’re still in our slow steady climb, and we are certain that we will get through this with our entire family intact.
We've known since we got here that his head trauma was the primary concern. Our salty nurse mentioned a condition that she read in his records. She didn't say it was a diagnosis or suggestion or whatever, she just said she read the words. We had told her that none of the doctors had really spoken to us. She stared at me blankly and said "If it was my family, I'd demand to speak to the neurologist." She refused to say any more.
Mom left dad's room for a moment and I instantly grabbed my computer. It was 10 pm, I felt powerless, and all I could do was start researching. I remembered the condition and by the power vested in Google, I started to read. Then panic.
The condition she described will be left out of this discussion until I have a specific diagnosis from an MD, but it can be the most devastating of all brain traumas. Patients tend to live in a vegetative state, 90% never wake up, and those that do almost never regain full function. That's the worst of it. The milder forms can make an almost full recovery. Right now, we've got no idea where he may lie within that spectrum.
I fell apart. I sobbed into my blanket so dad wouldn't hear me. Mom came back in and I slammed my Mac shut. I couldn't bear to let her read it until I knew more. I made her get her pal Dr. Andy on the phone. He works with cardio, but I had a feeling he'd know something to help me rationalize the neuro. He did, I regrouped, and I took action.
Mom and I had a mini-conference outside the wing, then geared up for our fight. I walked back to our nurse and said that we'd be back at 3:30 am, and were not leaving his room until we spoke to a neurologist. She understood, and for the first time that night, showed compassion; she brought us 2 warm blankets.
The neurologist finally came through at 7 am. I was barely awake but angry enough to pull through it. I fired questions at him like an automatic weapon. He spoke in incredibly general terms, and I kept pushing. I needed to know if that condition was a diagnosis, a suggestion or a mere pondering. He told me it was one of a list of possibilities, none of which they were currently able to confirm. That oddly made me feel better.
We've now gotten a more realistic picture of where his brain function lies. We are exactly where we thought we were yesterday, just with a nervous curveball and shaken faith in the form of a gruff overnight nurse. Dad's got lots of contusions (bruises) on his left frontal area. That's an important one- it controls speech, movement, and some portions of memory. Surgery's not an option, nor should it be now, because removing any part of that eliminates any chance for healing itself.
According to the neurologist, the priority this week has been stabilization and reduction of swelling, which we knew. We have to ensure his other bodily functions are in tact (eg his kidneys don't fail) while his brain decides what it wants to do. He is no longer on any kind of sedative, so we do see some reactions to pain stimuli. Over the next 1-2 weeks, we should see an increase in responses in reaction and some independent action. I'm asking Santa to let my dad speak to me for Christmas.
I've got to get in line now to reserve 2 of the coveted family waiting room sleeping chairs for me and mom. She's driving back to her house to pick up clothes for the week, get the mail, and spend some time with our beloved dog Daisy. It's the first time she's left Little Rock since the accident.
So many of you ask what you can do to help. First, give care or concern for my father and family in whatever fits your belief system: prayer, candles, chants, voodoo, whatever. Second, check this site for updates. We can absolutely take phone calls as well, but this will probably be more concise. Third, if you'd like to visit, feel free, but keep in mind that no one is allowed in Dad's room between the hours of 6-8, am and pm. Odds are that if Mom leaves the building, she'll do it then. Of course, if you'd like to go with her to get coffee or dinner, that's also an option.
Once we're a little more comfortable with the groove of this place, I may put together a rotation of people to be here to relieve my mom. She's going to need to spend some time away from here to keep her sanity, but she can't bear to leave unless she knows someone's here to be with him. Keep that in the back of your minds until we get more comfortable with the idea.
I’m heading home to Chicago for a week tomorrow night. I’m not particularly ready to go yet, but Mom’s sending me back to take care of some business. Keep up the hope and faith, because I know we are. We’re still in our slow steady climb, and we are certain that we will get through this with our entire family intact.
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