Well, it was yesterday, but I just found out about it.
Mom got an eerie feeling around 4am that something was wrong. She got up, drove straight there, and sure enough: Dad's fever had jumped to 103. The staff ran a lot of tests: EKG to check heart, and a laundry list of others. Nothing too crazy, but it's really irritating that his fever gets to such a treacherous level with no explanation. Sure, there's the hypothalmus/neuro fever explanation (as in his HT gland also sustained injury and is deciding to go bananas), but I feel like there's more.
At any rate, he's better today, much more calm. Thank goodness.
I'm currently still (yes, still) in my office researching travel options. CCPA's audition season is about to heat up, which means 50+ hour work weeks and all my weekends from late January to mid-March are gone. I cannot wait that long to see my father. My Boston conference for work just got canceled, so now I'm going to try to find a way to get home next weekend. In the event any of you know someone with a private plane, give them my number ;)
Wednesday, January 13, 2010
Monday, January 11, 2010
Technology rocks/Almost
I title it this way because I'm posting directly from my iPhone! Steve jobs is my hero.
Why am I posting in the middle if the night? Because I keep waking up for no reason. Well, not no reason...someone may have had a little too much coffee a little too late in the day. I'm asleep for a moment, until Our Lady Of Starbucks decides I need to shoot out of bed in a panic, thinking it's daybreak. Awesome.
The second half of the title refers to my Papa. We get a lot of 'almosts' from the staff about him right now. He's almost completely off the ventilator after his little infection showdown. He's almost staph-free.
We ask, "is he back to the health level he was after Christmas?"
" Almost."
Can we finally get back on track to plan his transfer closer to home?
"Almost."
I'm crossing my fingers for a few more good days, after which I'll have the confidence to get on the phone and beg them to look at his transfer file. I certainly don't want to transfer him back home until he's strong enough, but I hope it's soon for my Mom's sake; she's been there and back every single day, including last week's school-closing bad weather days.
I'm almost sleepy again, so I'm off. Play some music from the oldies radio station tomorrow and take a second to think of Dad. I myself will now attempt to drift off to Sam Cooke.
Why am I posting in the middle if the night? Because I keep waking up for no reason. Well, not no reason...someone may have had a little too much coffee a little too late in the day. I'm asleep for a moment, until Our Lady Of Starbucks decides I need to shoot out of bed in a panic, thinking it's daybreak. Awesome.
The second half of the title refers to my Papa. We get a lot of 'almosts' from the staff about him right now. He's almost completely off the ventilator after his little infection showdown. He's almost staph-free.
We ask, "is he back to the health level he was after Christmas?"
" Almost."
Can we finally get back on track to plan his transfer closer to home?
"Almost."
I'm crossing my fingers for a few more good days, after which I'll have the confidence to get on the phone and beg them to look at his transfer file. I certainly don't want to transfer him back home until he's strong enough, but I hope it's soon for my Mom's sake; she's been there and back every single day, including last week's school-closing bad weather days.
I'm almost sleepy again, so I'm off. Play some music from the oldies radio station tomorrow and take a second to think of Dad. I myself will now attempt to drift off to Sam Cooke.
Monday, January 4, 2010
Snow day!
Well, not for me, but for lots of you Arkansans- congrats! I remember when I thought everyone had snow days, and how I learned the hard way. My first year in grad school in Chicago, we had our first snowfall in November, a whopping 2 inches. And since where I grew up everybody hits Wal-Mart for provisions, boils water and bunkers down at the first mention of a snowflake, I thought, "Yay! No classes tomorrow!" I slept in, only to find out that not only had I missed class sessions, I was being ridiculed for my naïveté...by both students and faculty. One professor took pity on me and cut me a break; he was originally from Louisiana. At any rate, congrats on having one more vacation day.
Dad's better now, but we had a pretty big scare right before the new year. We don't know the origin, but Dad contracted an infection that spread to his blood. On Thursday his fever spiked to 105. There were 6 very tense hours that day where his outcome was up in the air. This could have come from anyone or anywhere; the holidays bring multiple groups of people together, and one of them may have had a cough. He/she shakes hand with someone...you know the drill. But with Dad's fragile and bedridden condition, what's a tiny sniffle for me or you could be deadly for him. I can't stress this enough: please be cautious if you are coming to visit: sanitize your hands on your way in and out of his room, both for his safety and yours. If you've not felt well, wait to come visit. We're in this for a while, so there will be plenty of time.
With all the infection fun, his Sunday Speaking Spectacular has virtually gone unnoticed. The focus once again went to ventilators (he had to go back on one temporarily, and periodically thereafter for treatments), antibiotics and cooling blankets. Once we're fully in the clear and his strength grows, we'll try again.
The transfer to a closer-to-home venue is still on, but delayed. There are a few people on the SSH list ahead of him who need to go, and of course they're checking his immune system to make sure he'll still be strong enough to go. Most likely we'll be seeing it happen mid-to-late January. I crossing my fingers that I can be home for it, although a work conference in Boston might prohibit that.
I've been doing a lot of research on TBIs, sound therapy and music's effect on these types of patients. Things like Mozart versus Motown, the use of bitonality in energizing or relaxing the brain. Music was a big part of our lives before, so it's only natural that it can help us now. Fascinating-yet-not-totally-related book recommendation: Oliver Sack's Musicophilia. Awesome read. Grab it if you're looking for something new.
I plan on chatting with Mumtaz and company tomorrow to see how they feel about Dad post-infection. KEEP HOPING. We still need it.
Dad's better now, but we had a pretty big scare right before the new year. We don't know the origin, but Dad contracted an infection that spread to his blood. On Thursday his fever spiked to 105. There were 6 very tense hours that day where his outcome was up in the air. This could have come from anyone or anywhere; the holidays bring multiple groups of people together, and one of them may have had a cough. He/she shakes hand with someone...you know the drill. But with Dad's fragile and bedridden condition, what's a tiny sniffle for me or you could be deadly for him. I can't stress this enough: please be cautious if you are coming to visit: sanitize your hands on your way in and out of his room, both for his safety and yours. If you've not felt well, wait to come visit. We're in this for a while, so there will be plenty of time.
With all the infection fun, his Sunday Speaking Spectacular has virtually gone unnoticed. The focus once again went to ventilators (he had to go back on one temporarily, and periodically thereafter for treatments), antibiotics and cooling blankets. Once we're fully in the clear and his strength grows, we'll try again.
The transfer to a closer-to-home venue is still on, but delayed. There are a few people on the SSH list ahead of him who need to go, and of course they're checking his immune system to make sure he'll still be strong enough to go. Most likely we'll be seeing it happen mid-to-late January. I crossing my fingers that I can be home for it, although a work conference in Boston might prohibit that.
I've been doing a lot of research on TBIs, sound therapy and music's effect on these types of patients. Things like Mozart versus Motown, the use of bitonality in energizing or relaxing the brain. Music was a big part of our lives before, so it's only natural that it can help us now. Fascinating-yet-not-totally-related book recommendation: Oliver Sack's Musicophilia. Awesome read. Grab it if you're looking for something new.
I plan on chatting with Mumtaz and company tomorrow to see how they feel about Dad post-infection. KEEP HOPING. We still need it.
Tuesday, December 29, 2009
Gimme an E (EG!)
Not a marathon read today. You're welcome!
After Dad's surprising words Sunday, we called in the nurses and even his primary doc, Dr. Mumtaz. They weren't nearly as impressed. Ah well, I get it; it's not their dad. Plus they need cold hard data to see what's really going on.
Dad received another EEG yesterday, so I expect to hear something later today. In the meantime I've got piles of work on my desk to keep me busy and a fierce cold to brave when I go out for lunch. I've been somewhere mild for a week, so I forgot what 20 degrees feels like.
Again, human contact is what's really getting reactions out of him, so if you're able to make it to Little Rock in the next week, swing by. If not, we'll have him home in Russ Vegas soon enough. Keep on sending those happy vibes- they're reaching all the powers that be, even Santa.
After Dad's surprising words Sunday, we called in the nurses and even his primary doc, Dr. Mumtaz. They weren't nearly as impressed. Ah well, I get it; it's not their dad. Plus they need cold hard data to see what's really going on.
Dad received another EEG yesterday, so I expect to hear something later today. In the meantime I've got piles of work on my desk to keep me busy and a fierce cold to brave when I go out for lunch. I've been somewhere mild for a week, so I forgot what 20 degrees feels like.
Again, human contact is what's really getting reactions out of him, so if you're able to make it to Little Rock in the next week, swing by. If not, we'll have him home in Russ Vegas soon enough. Keep on sending those happy vibes- they're reaching all the powers that be, even Santa.
Monday, December 28, 2009
While you were Holiday-ing...
...a lot has happened. Reporting on it hasn't been an option because 1) the secure socket layer for Chez Vinny's internet got a little too secure, and I wasn't able to access the site from SSH; 2) the sherwood wilderness that is my parents' property blocks any sort of wireless communication- thanks Pop for planting 1 bajillion trees when we moved in 1988; 3) any time I wasn't at SSH or home I was Mom's chauffeur. Stare at Interstate 40, stare at Dad, stare at Interstate 40. Repeat. Those were my days. I drove from Chicago, and in 8 days I've logged 1500 miles and 32 hours in my car...and I'm not even home yet.
I did draft an entry right before Christmas, so I'll publish that along with today's info. Grab a sandwich, beverage and a blanket- you'll be here a while.
WEDNESDAY, Dec 23: Taking Care Of Business
And working overtime. Work Out.
Today was less filled with Dad and more filled with errands to take care of Dad: dropping forms with his work's HR office (Hi ladies! You were all lovely), grabbing extra copies of documents from our fabulous attorney Susan, getting all the papers in ONE place for Mom, and a very different kind of Christmas shopping. For a skilled nursing facility. Cue the single, pathetic party whistle.
Here's the thing: like I mentioned, Dad's not ready for a fully aggressive rehab facility. SSH won't be able to keep him for much longer, so skilled nursing is the next step. Skilled nursing is considered short-term, but it's longer than anything we've known (90-120 days). It combines less acute nursing care with physical and occupational therapy (where possible). It gives Dad a place to be cared for and worked on while the noggin decides where and when it will show up again. There are facilities all over the state, including some that are much closer to home. The issue? Most of these facilities are housed within nursing homes. My stomach collapsed with the news.
My family knows the nursing home setup quite well- I spent lots of time in them as a kid (funeral homes too, but that's because Grandma took me to work with her...that's a story for another time). Whether we were visiting my 100-yr-old great Granny Sanders or I was singing Christmas carols as entertainment for the 3 pm dinnertime rush, I knew those places inside out. And loathed them. The musty smell, the desperate attempts to cover the gray walls with festive glitter/construction paper cutouts, the shouting of phrases like "Did you take your pill?" loud enough for Aunt Marge to hear. I hated them. At six years old I deduced one thing: this is where people were sent to die. And now, 23 years later, Mom and I had to decide which one would get my father. Merry Freaking Christmas.
To our surprise, both of the facilities we visited were not the doom chambers we remembered. There was no "nursing home smell!" Both Facility A and B were recently remodled/constructed, with modern decor and furnishings, and were remarkably clean. Both accommodated our request for a tour with no appointment and had very friendly guides/RNs to answer our questions. Facility A had wonderfully bright wall colors, and Facility B had a very open floor plan. After a short time in each place, I felt comforted, invited and safe.
What started out as the unthinkable option turned into a rational decision for both of us. Either facility can give him what he needs and keep him in one place, and that place happens to be MUCH closer to home (no more 80 mile, 1.5 hour one-way drives for her). And oh yeah, it won't smell like death. Mom can be there any time day or night, and can be near home/Daisy, eventually go back to work and get as close to back to normal as possible while we give Dad the time he needs. The closeness also makes visiting much easier, and the incredible support system that is their church, colleagues and community will remain intact (and heads-up: once this move happens I'll be relying on all of you to help. Get ready). We drove to Dad today with more optimism/relief than either of us thought possible.
Despite that relief, this holiday is going to be emotionally difficult for us. It's not lost on me that my tiny family has plummeted from 5 to 2.5 in 18 months (for those attempting to do the math, that's an accident/domestic upset every 6 months since last fall). This is only our second Christmas without Grandma, and my first without Teppei. There are moments that I silently panic when I can't find Mom, because I'm terrified I'll lose her too. But we're here. He's here. So we must be grateful for what we have, and have faith in the knowledge and understanding that these experiences can bring.
I'm not exactly sure what our holiday plans entail, except of course the daily drives to the Rock to see Dad and the nightly snuggle sessions with Daisy the dog. Wherever we end up, know that I will be remembering each of you who have called/written/read this site. Your positive energy is my Christmas gift.
May you have a pleasant holiday, however you chose to celebrate. We love you.
-----ok. Here's today's update. SIT DOWN. Trust me.------
SUNDAY, December 27. The House of "Yes"
Greetings from the Days Inn in Mt. Vernon, IL. I'm here because I got a late start home- you'll know why soon.
Mom and I had a relatively unremarkable holiday. The timing of our visits to Dad delayed all our initial plans. We had a just-the-two of us dinner on the Eve, a quick jaunt to her parents on the Morning, and simply did what we do every day. We did bookend the period with 2 visits to see my best friend and adorable baby niece, and the rest of the awesome Sorrells family. Hands down: 3 cutest grandkids in the Valley. It was the one happy, soul-restoring activity in an otherwise less-than-merry time. I'm pretty sure we both just chose not to talk about our situation and just get through the time emotionally intact. Sometimes it's best to say nothing and pretend you don't feel it.
My uncle Johnnie and aunt Valli (Dad's older brother/sis-in-law) drove in from Texas on Saturday to visit. The moment Dad heard Johnnie's voice he went to town: fingers, arms, right eye, mouth. And he didn't stop for hours. It was awesome. That morning, during my periodic lotion rubdown of Dad's feet/legs (for a man's man, he is alarmingly finicky about dry skin and smelling good, so we're keeping that up for him now), as I moved his left leg, he winced in pain. Not in an "excuse me, might you stop that?" way, but a "OW! PUT MY F*&$^NG LEG DOWN, YOU'RE KILLING ME!" way. This may sound weird, but I was thrilled. He's feeling pain in places he hasn't, and he's letting us know.
While Johnnie was playing the hand squeeze game with his brother, Dad started to open his mouth as if to say something. That stunned us- we hadn't seen that yet. We mentioned it to his respiratory therapist that night, and she offered up the option of a speaking valve on his trach tube. It's an attachment with simulated plastic vocal chords. Think less chain-smoker's robotic voice machine, more duck hunting call. In the event Dad would actually attempt to speak/make noise, we'd have a better shot at hearing him. She left the equipment in his room and suggested we try it Sunday.
Right before we left for the night, his sassy nursing assistants came in to turn him (which they do every 2 hours). These ladies are hysterical, giving each other a hard time as they tease the patients in hopes of getting a rise out of them. It's like having Frangela and the Smothers Brothers on the in-house staff. One of them got sassy with Dad, and since he can't sass back he raised his whole arm up to grab her elbow. Oh yeah, he's in there.
This morning we got there with the plan that I'd sit for an hour then go; I had a 10 hour drive home to Chicago. I kept getting delayed. Then Glenn, a high school friend of Dad's called to let us know he was coming to visit- more delay. Dad heard Glenn's voice and immediately responded with his hands (which was a bit shocking: given Dad's big show on Saturday, we were expecting crickets from him the following day). His day resp therapist put the speaking valve on him, more to appease my Mom than anything. The second it was on, Dad's mouth started moving, and we heard jibberish sounds. It was clear he was making an effort.
Then it happened.
Glenn: "Hey old buddy, you're looking good. Are you in pain?"
Dad (almost inaudibly): "Yes."
Mom and I froze. I could not believe it had happened. He spoke. Comprehensibly. I couldn't move a muscle in my body for 30 solid seconds. Nothing ever felt so wonderful or scary in my life. Mom teared up and I started looking for stuff to poke him with (so I could keep him awake and ask him questions). Six weeks ago I didn't think he'd live and now he's telling me he's in pain, most likely because I was shaking his legs in an attempt to rouse him. It was unbelievable.
He didn't respond to much else. His eyes remained closed for most of the afternoon, I think we wore him out with all the party tricks (Watch his fingers while I jiggle his arm- he'll move them!). But I didn't care. It was worth it for that one word. I couldn't leave his side for 3 more hours.
Right before Glenn left, we got one more nugget of hope.
Glenn: "OK buddy, I've got to run. I'm going to go now."
Dad, as he raises his hand to find Glenn's: "OK."
EEEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! That's TWO!
Now do you understand why I told you to sit down?
I stuck around for a bit longer, but he was spent. And so were we. I said my goodbyes to Mom and drove as far as I could before crashing in this hotel.
As wonderful as those moments were, they're in no way indicative of the end of this story. There won't be a cinematic moment later this week when he suddenly sits upright, orders a cheeseburger and asks how healthcare reform is going. We are still cognizant of our yearlong, or possibly longer, journey to any sort of normal life for him. But the moments are absolutely a step (albeit a shocking one) in the right direction.
From here the focus is on the selection and move to a skilled nursing facility. The transport won't happen until the new year, but most likely in the first week. Once we know where he's going, details on how and where to visit will of course be posted here. As we've witnessed first hand, human contact is the primary stimulator that he needs. It is imperative that his friends and family surround him, speak to him, hold his hands, and once he can keep his eye(s) open, keep his gaze so he can remember. Keep this in mind- you're going to help us get him back.
I did draft an entry right before Christmas, so I'll publish that along with today's info. Grab a sandwich, beverage and a blanket- you'll be here a while.
WEDNESDAY, Dec 23: Taking Care Of Business
And working overtime. Work Out.
Today was less filled with Dad and more filled with errands to take care of Dad: dropping forms with his work's HR office (Hi ladies! You were all lovely), grabbing extra copies of documents from our fabulous attorney Susan, getting all the papers in ONE place for Mom, and a very different kind of Christmas shopping. For a skilled nursing facility. Cue the single, pathetic party whistle.
Here's the thing: like I mentioned, Dad's not ready for a fully aggressive rehab facility. SSH won't be able to keep him for much longer, so skilled nursing is the next step. Skilled nursing is considered short-term, but it's longer than anything we've known (90-120 days). It combines less acute nursing care with physical and occupational therapy (where possible). It gives Dad a place to be cared for and worked on while the noggin decides where and when it will show up again. There are facilities all over the state, including some that are much closer to home. The issue? Most of these facilities are housed within nursing homes. My stomach collapsed with the news.
My family knows the nursing home setup quite well- I spent lots of time in them as a kid (funeral homes too, but that's because Grandma took me to work with her...that's a story for another time). Whether we were visiting my 100-yr-old great Granny Sanders or I was singing Christmas carols as entertainment for the 3 pm dinnertime rush, I knew those places inside out. And loathed them. The musty smell, the desperate attempts to cover the gray walls with festive glitter/construction paper cutouts, the shouting of phrases like "Did you take your pill?" loud enough for Aunt Marge to hear. I hated them. At six years old I deduced one thing: this is where people were sent to die. And now, 23 years later, Mom and I had to decide which one would get my father. Merry Freaking Christmas.
To our surprise, both of the facilities we visited were not the doom chambers we remembered. There was no "nursing home smell!" Both Facility A and B were recently remodled/constructed, with modern decor and furnishings, and were remarkably clean. Both accommodated our request for a tour with no appointment and had very friendly guides/RNs to answer our questions. Facility A had wonderfully bright wall colors, and Facility B had a very open floor plan. After a short time in each place, I felt comforted, invited and safe.
What started out as the unthinkable option turned into a rational decision for both of us. Either facility can give him what he needs and keep him in one place, and that place happens to be MUCH closer to home (no more 80 mile, 1.5 hour one-way drives for her). And oh yeah, it won't smell like death. Mom can be there any time day or night, and can be near home/Daisy, eventually go back to work and get as close to back to normal as possible while we give Dad the time he needs. The closeness also makes visiting much easier, and the incredible support system that is their church, colleagues and community will remain intact (and heads-up: once this move happens I'll be relying on all of you to help. Get ready). We drove to Dad today with more optimism/relief than either of us thought possible.
Despite that relief, this holiday is going to be emotionally difficult for us. It's not lost on me that my tiny family has plummeted from 5 to 2.5 in 18 months (for those attempting to do the math, that's an accident/domestic upset every 6 months since last fall). This is only our second Christmas without Grandma, and my first without Teppei. There are moments that I silently panic when I can't find Mom, because I'm terrified I'll lose her too. But we're here. He's here. So we must be grateful for what we have, and have faith in the knowledge and understanding that these experiences can bring.
I'm not exactly sure what our holiday plans entail, except of course the daily drives to the Rock to see Dad and the nightly snuggle sessions with Daisy the dog. Wherever we end up, know that I will be remembering each of you who have called/written/read this site. Your positive energy is my Christmas gift.
May you have a pleasant holiday, however you chose to celebrate. We love you.
-----ok. Here's today's update. SIT DOWN. Trust me.------
SUNDAY, December 27. The House of "Yes"
Greetings from the Days Inn in Mt. Vernon, IL. I'm here because I got a late start home- you'll know why soon.
Mom and I had a relatively unremarkable holiday. The timing of our visits to Dad delayed all our initial plans. We had a just-the-two of us dinner on the Eve, a quick jaunt to her parents on the Morning, and simply did what we do every day. We did bookend the period with 2 visits to see my best friend and adorable baby niece, and the rest of the awesome Sorrells family. Hands down: 3 cutest grandkids in the Valley. It was the one happy, soul-restoring activity in an otherwise less-than-merry time. I'm pretty sure we both just chose not to talk about our situation and just get through the time emotionally intact. Sometimes it's best to say nothing and pretend you don't feel it.
My uncle Johnnie and aunt Valli (Dad's older brother/sis-in-law) drove in from Texas on Saturday to visit. The moment Dad heard Johnnie's voice he went to town: fingers, arms, right eye, mouth. And he didn't stop for hours. It was awesome. That morning, during my periodic lotion rubdown of Dad's feet/legs (for a man's man, he is alarmingly finicky about dry skin and smelling good, so we're keeping that up for him now), as I moved his left leg, he winced in pain. Not in an "excuse me, might you stop that?" way, but a "OW! PUT MY F*&$^NG LEG DOWN, YOU'RE KILLING ME!" way. This may sound weird, but I was thrilled. He's feeling pain in places he hasn't, and he's letting us know.
While Johnnie was playing the hand squeeze game with his brother, Dad started to open his mouth as if to say something. That stunned us- we hadn't seen that yet. We mentioned it to his respiratory therapist that night, and she offered up the option of a speaking valve on his trach tube. It's an attachment with simulated plastic vocal chords. Think less chain-smoker's robotic voice machine, more duck hunting call. In the event Dad would actually attempt to speak/make noise, we'd have a better shot at hearing him. She left the equipment in his room and suggested we try it Sunday.
Right before we left for the night, his sassy nursing assistants came in to turn him (which they do every 2 hours). These ladies are hysterical, giving each other a hard time as they tease the patients in hopes of getting a rise out of them. It's like having Frangela and the Smothers Brothers on the in-house staff. One of them got sassy with Dad, and since he can't sass back he raised his whole arm up to grab her elbow. Oh yeah, he's in there.
This morning we got there with the plan that I'd sit for an hour then go; I had a 10 hour drive home to Chicago. I kept getting delayed. Then Glenn, a high school friend of Dad's called to let us know he was coming to visit- more delay. Dad heard Glenn's voice and immediately responded with his hands (which was a bit shocking: given Dad's big show on Saturday, we were expecting crickets from him the following day). His day resp therapist put the speaking valve on him, more to appease my Mom than anything. The second it was on, Dad's mouth started moving, and we heard jibberish sounds. It was clear he was making an effort.
Then it happened.
Glenn: "Hey old buddy, you're looking good. Are you in pain?"
Dad (almost inaudibly): "Yes."
Mom and I froze. I could not believe it had happened. He spoke. Comprehensibly. I couldn't move a muscle in my body for 30 solid seconds. Nothing ever felt so wonderful or scary in my life. Mom teared up and I started looking for stuff to poke him with (so I could keep him awake and ask him questions). Six weeks ago I didn't think he'd live and now he's telling me he's in pain, most likely because I was shaking his legs in an attempt to rouse him. It was unbelievable.
He didn't respond to much else. His eyes remained closed for most of the afternoon, I think we wore him out with all the party tricks (Watch his fingers while I jiggle his arm- he'll move them!). But I didn't care. It was worth it for that one word. I couldn't leave his side for 3 more hours.
Right before Glenn left, we got one more nugget of hope.
Glenn: "OK buddy, I've got to run. I'm going to go now."
Dad, as he raises his hand to find Glenn's: "OK."
EEEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! That's TWO!
Now do you understand why I told you to sit down?
I stuck around for a bit longer, but he was spent. And so were we. I said my goodbyes to Mom and drove as far as I could before crashing in this hotel.
As wonderful as those moments were, they're in no way indicative of the end of this story. There won't be a cinematic moment later this week when he suddenly sits upright, orders a cheeseburger and asks how healthcare reform is going. We are still cognizant of our yearlong, or possibly longer, journey to any sort of normal life for him. But the moments are absolutely a step (albeit a shocking one) in the right direction.
From here the focus is on the selection and move to a skilled nursing facility. The transport won't happen until the new year, but most likely in the first week. Once we know where he's going, details on how and where to visit will of course be posted here. As we've witnessed first hand, human contact is the primary stimulator that he needs. It is imperative that his friends and family surround him, speak to him, hold his hands, and once he can keep his eye(s) open, keep his gaze so he can remember. Keep this in mind- you're going to help us get him back.
Tuesday, December 22, 2009
Twas the Tuesday before Christmas
...and all through Chez Vinny...I got nothing. I thought I could cutesy it up, but I'm spent. Perhaps it's from the shock and awe after seeing my father for the first time in 3 weeks.
He looks incredible. His face is completely normal. His eyelids flutter. He opens his right eye fully when stimulated (or rather, when he's being turned from side to side). His arm and hand muscles are rewiring, because he moves them constantly. He squeezes my hands and brushes his thumb/index finger together in circular motions, as if he's feeling a fabric for texture. He'll kick his legs ever so slowly if he's stimulated enough. All great things, right? Sort of.
While these are all wonderful signs, they aren't necessarily indicative of where he is mentally. But that's ok- we can let his body heal everywhere from the neck down while we observe and report on the brain progress.
So here's where we stand:
While these improvements are all reasons for me to do a happy dance, there's still an infinite amount on information we don't have on his brain status. SSH is a great facility, but it's for acute care, and soon Dad won't need or be able to be here anymore. He's not ready for rehab yet (while he does squeeze my hand, he isn't able to follow it as a command, or any other basic command), so we must start looking for another facility to move him to until he's ready for rehab. I met with the case worker today and learned about our responsibilities through the process, and will be scouting locations during my stay here.
Mom and I are here every day, and will be here for the Christmas holidays. There's no place I'd rather be.
One more piece of great news- his breathing is great! The resp therapist was planning on "capping him off" today. No, that's not a gun reference. He wanted to remove the breathing tube from Dad's trach and cover the end with a cap to let him completely breath on his own (cue the wows, hurrays and whoopees). But Dad's been producing lots of fluid from his lungs today (seeing it is just as lovely as it sounds, btw), so he decided to wait. They expect to be able to cap him in a matter of days.
Again, there's a fine line between hope and delusion. It's a tightrope, really, and we walk it daily without a balance bar.
I've got to change the music in Dad's iPod and decide which cookies I'll be baking for the nursing staff, so I'm out for now. More updates soon. Make sure Dad's on your list for Santa and let's hope he gets the point.
He looks incredible. His face is completely normal. His eyelids flutter. He opens his right eye fully when stimulated (or rather, when he's being turned from side to side). His arm and hand muscles are rewiring, because he moves them constantly. He squeezes my hands and brushes his thumb/index finger together in circular motions, as if he's feeling a fabric for texture. He'll kick his legs ever so slowly if he's stimulated enough. All great things, right? Sort of.
While these are all wonderful signs, they aren't necessarily indicative of where he is mentally. But that's ok- we can let his body heal everywhere from the neck down while we observe and report on the brain progress.
So here's where we stand:
While these improvements are all reasons for me to do a happy dance, there's still an infinite amount on information we don't have on his brain status. SSH is a great facility, but it's for acute care, and soon Dad won't need or be able to be here anymore. He's not ready for rehab yet (while he does squeeze my hand, he isn't able to follow it as a command, or any other basic command), so we must start looking for another facility to move him to until he's ready for rehab. I met with the case worker today and learned about our responsibilities through the process, and will be scouting locations during my stay here.
Mom and I are here every day, and will be here for the Christmas holidays. There's no place I'd rather be.
One more piece of great news- his breathing is great! The resp therapist was planning on "capping him off" today. No, that's not a gun reference. He wanted to remove the breathing tube from Dad's trach and cover the end with a cap to let him completely breath on his own (cue the wows, hurrays and whoopees). But Dad's been producing lots of fluid from his lungs today (seeing it is just as lovely as it sounds, btw), so he decided to wait. They expect to be able to cap him in a matter of days.
Again, there's a fine line between hope and delusion. It's a tightrope, really, and we walk it daily without a balance bar.
I've got to change the music in Dad's iPod and decide which cookies I'll be baking for the nursing staff, so I'm out for now. More updates soon. Make sure Dad's on your list for Santa and let's hope he gets the point.
Tuesday, December 15, 2009
The Ides of December
Hi all,
Sorry for the weeklong absence. In all honesty, there hasn't been too much to report. Teeny tiny improvements, for which we're incredibly grateful. In fact, we got great news today-
The large respirator has been wheeled out of his room, because Dad's been able to sustain his own breathing for periods longer than 72 hours on the Tpat breathing machine! In addition, his breathing tube has been reduced from a size 8 to a size 6! I don't even know what that means, but apparently it's good so I'm excited and using exclamation points!!!!
Dr. Mumtaz, Dad's main MD, is very aware of dad's steps in the right direction and has stated to my mother that he's making "significant improvements." The goal is to keep him in SSH as long as possible, and many doctors have given us their word that they will do everything to keep him there. Again, we have MILES to go before Dad doesn't sleep, but it's still all good. Dad's eye (yes, just the one right now) is opening and blinking in response to sounds, and his fingers wiggle from time to time. All good.
If you're in the area, please do go see him. He could absolutely use the visitors and stimulation. I'll be heading there from my frozen tundra of a city on Sunday. Do me a solid and entertain him until I get there.
Sorry for the weeklong absence. In all honesty, there hasn't been too much to report. Teeny tiny improvements, for which we're incredibly grateful. In fact, we got great news today-
The large respirator has been wheeled out of his room, because Dad's been able to sustain his own breathing for periods longer than 72 hours on the Tpat breathing machine! In addition, his breathing tube has been reduced from a size 8 to a size 6! I don't even know what that means, but apparently it's good so I'm excited and using exclamation points!!!!
Dr. Mumtaz, Dad's main MD, is very aware of dad's steps in the right direction and has stated to my mother that he's making "significant improvements." The goal is to keep him in SSH as long as possible, and many doctors have given us their word that they will do everything to keep him there. Again, we have MILES to go before Dad doesn't sleep, but it's still all good. Dad's eye (yes, just the one right now) is opening and blinking in response to sounds, and his fingers wiggle from time to time. All good.
If you're in the area, please do go see him. He could absolutely use the visitors and stimulation. I'll be heading there from my frozen tundra of a city on Sunday. Do me a solid and entertain him until I get there.
Monday, December 7, 2009
2 steps forward...
...1 step back. That's the process we were told, and we're living it.
Mom and I had a teleconference with Dad's case worker and his primary MD, Dr. Mumtaz today (and by teleconference, I mean I was on a cell phone in my office in Chicago while the 3 of them in the Rock figured out how to turn on Mom's cell speakerphone). We discussed where Dad is, what's to be expected, and what he's done that's unexpected. I learned a lot and nothing at all simultaneously.
Overall, it's been a good week. Dad has had two fever spikes, this morning's as high as 105. He's had blood culture's done 3 times to check for infection, and only on the first did they find anything (which was treated). Dr. Mumtaz is pretty sure that the fever's neurological, as A. the brain also helps regulate temp, so if something's amiss it will fluctuate and B. infection temps hover more around 102. But again, with long term care you must think in weeks, not moment-to-moment. If 5 of his last 7 days are good, that week goes in the "win" column.
Dad's official diagnosis from neurology will be severe traumatic brain injury. DO NOT google or Wikipedia unless you're sitting down and prepared. And even then, don't listen to Wikipedia...ever. It's too malleable to be a reliable source. We have not been told where he is on the Glasgow Coma Scale (mostly because I failed to ask, and the neurologist wasn't present). What we do know is that unconsciousness tends to last longer for people with injuries on the left side of the brain than for those to the right. Again, we simply must wait.
That's the worst news. What's better is that Dr Mumtaz believes that Dad's more responsive than ever as of today. He does have periods of eye opening and blinking. His nurse this morning told the doctor that she observed an obvious attempt on his part to follow the "squeeze my hand" command, something we've tried since the beginning unsuccessfully. That's huge. He held his own on two separate TPat breathing attempts (that's a step down from his normal respirator, a good thing), and only when his fever spiked did the techs have to increase his oxygen dosage.
The prognosis is dim, but you can help brighten it. If you're looking to help and happen to be in the Little Rock area, one of the best things you can do is visit Dad and talk to him. Brain stimulation is key to bring him out of this, and the more familiar voices, the merrier. Again, he's at Select Specialty Hospital at St Vincent, Markham and University, 6th floor. A few ground rules:
1. Do not, under any circumstances, visit if you are sick or caring for someone else who is ill. The tiniest risk of infection could have devastating consequences, and we need to keep him healthy. No coughs, no sniffles, nothing. He's going to be there a while, so we can wait until you're better.
2. Speak to him as if he's lucid, wide awake and sharing a glass of tea with you on the front porch. We have no reason to believe that he can't hear and understand everything. Feel free to tell "remember the time" stories about anything. Ask him questions and see if his eyelids flutter. You can even play the squeeze my hand game- first one gets a prize!
3. If you feel overcome with emotion, get out of that room. NO CRYING near the Dad. He needs the happy, not the sad. He's got enough problems and doesn't need any reason to give up hope. I hold both Mom and myself to this same standard, and I've only broken my rule once.
4. The SSH nursing staff has been amazing, so if the staff or techs come by, feel free to ask them questions. Most of their check-ins on Dad won't require you to leave the room, but some might. Don't be surprised if they ask for a little privacy.
5. Talk to Mom as well, about anything that's not involved with this accident and injury. She'll of course debrief you on where we are with Dad, but please also include conversations about something else. Funny stories, tabloid, gossip, anything. Try to make her laugh, but not so hard that she coughs. I know, it's a fine line...
So there's your update. It's not all good, but certainly not all bad. Just keep hoping and helping. I need my Dad. Help me get him back.
Mom and I had a teleconference with Dad's case worker and his primary MD, Dr. Mumtaz today (and by teleconference, I mean I was on a cell phone in my office in Chicago while the 3 of them in the Rock figured out how to turn on Mom's cell speakerphone). We discussed where Dad is, what's to be expected, and what he's done that's unexpected. I learned a lot and nothing at all simultaneously.
Overall, it's been a good week. Dad has had two fever spikes, this morning's as high as 105. He's had blood culture's done 3 times to check for infection, and only on the first did they find anything (which was treated). Dr. Mumtaz is pretty sure that the fever's neurological, as A. the brain also helps regulate temp, so if something's amiss it will fluctuate and B. infection temps hover more around 102. But again, with long term care you must think in weeks, not moment-to-moment. If 5 of his last 7 days are good, that week goes in the "win" column.
Dad's official diagnosis from neurology will be severe traumatic brain injury. DO NOT google or Wikipedia unless you're sitting down and prepared. And even then, don't listen to Wikipedia...ever. It's too malleable to be a reliable source. We have not been told where he is on the Glasgow Coma Scale (mostly because I failed to ask, and the neurologist wasn't present). What we do know is that unconsciousness tends to last longer for people with injuries on the left side of the brain than for those to the right. Again, we simply must wait.
That's the worst news. What's better is that Dr Mumtaz believes that Dad's more responsive than ever as of today. He does have periods of eye opening and blinking. His nurse this morning told the doctor that she observed an obvious attempt on his part to follow the "squeeze my hand" command, something we've tried since the beginning unsuccessfully. That's huge. He held his own on two separate TPat breathing attempts (that's a step down from his normal respirator, a good thing), and only when his fever spiked did the techs have to increase his oxygen dosage.
The prognosis is dim, but you can help brighten it. If you're looking to help and happen to be in the Little Rock area, one of the best things you can do is visit Dad and talk to him. Brain stimulation is key to bring him out of this, and the more familiar voices, the merrier. Again, he's at Select Specialty Hospital at St Vincent, Markham and University, 6th floor. A few ground rules:
1. Do not, under any circumstances, visit if you are sick or caring for someone else who is ill. The tiniest risk of infection could have devastating consequences, and we need to keep him healthy. No coughs, no sniffles, nothing. He's going to be there a while, so we can wait until you're better.
2. Speak to him as if he's lucid, wide awake and sharing a glass of tea with you on the front porch. We have no reason to believe that he can't hear and understand everything. Feel free to tell "remember the time" stories about anything. Ask him questions and see if his eyelids flutter. You can even play the squeeze my hand game- first one gets a prize!
3. If you feel overcome with emotion, get out of that room. NO CRYING near the Dad. He needs the happy, not the sad. He's got enough problems and doesn't need any reason to give up hope. I hold both Mom and myself to this same standard, and I've only broken my rule once.
4. The SSH nursing staff has been amazing, so if the staff or techs come by, feel free to ask them questions. Most of their check-ins on Dad won't require you to leave the room, but some might. Don't be surprised if they ask for a little privacy.
5. Talk to Mom as well, about anything that's not involved with this accident and injury. She'll of course debrief you on where we are with Dad, but please also include conversations about something else. Funny stories, tabloid, gossip, anything. Try to make her laugh, but not so hard that she coughs. I know, it's a fine line...
So there's your update. It's not all good, but certainly not all bad. Just keep hoping and helping. I need my Dad. Help me get him back.
Friday, December 4, 2009
They've got a plan!
After the Thursday team meeting, we're more convinced than ever that Dad's in the right place to improve. Just counting resp techs, physical and occupational therapists, there were at least ten people in the room with Mom. Ten people whose primary goal is to make my father progress as much as humanly possible. Amazing.
The EEG Dad received Tuesday has showed brain activity...not a lot, but some. Again, I'll take it. It means he's in there. Mom walked into Dad's room yesterday to see him open his right eye. She called me and put the phone to his ear, and he blinked in response to my voice.
Dad's doing well this week. Breathing's stable, temp's stable. We're thrilled and amazed by his progress. All we need is the go-ahead to bring in more visitors so we can get all of you to swing by and talk to him. Keep on praying, chanting, hoping. I know I am.
The EEG Dad received Tuesday has showed brain activity...not a lot, but some. Again, I'll take it. It means he's in there. Mom walked into Dad's room yesterday to see him open his right eye. She called me and put the phone to his ear, and he blinked in response to my voice.
Dad's doing well this week. Breathing's stable, temp's stable. We're thrilled and amazed by his progress. All we need is the go-ahead to bring in more visitors so we can get all of you to swing by and talk to him. Keep on praying, chanting, hoping. I know I am.
Tuesday, December 1, 2009
Still Waiting
Monday was not the day of revelations we anticipated.
Not a bad day at all; the doctors simply didn't meet in the collective powwow we had thought would happen. Dad's main Md, Dr. Mumtaz, has ordered a neurologist consult, and it's a bit counterintuitive to have physical and occupational therapists flinging him around before the head squad's had their say.
The delay was actually great for Mom and I- we've been doing legal housekeeping. My folks have always had separate checking accounts and split the home's expenses. But these pesky things called bills have shown up in Dad's name, and they are due, um...now. So we're working to make it possible for Mom to handle those, and putting my name on a few documents as backup.
We also got a chance to meet with Brenda, our case worker at SSH. We set goals for his stay (1. get him off ventilation, 2. WAKE him) and discussed long term options. She's incredibly nice, and went out of her way to get me a list of facilities so I can start doing research for a possible transfer later.
Earlier today Dad got his first EEG (and it's about flipping time- I've been asking about them for 2 weeks- I'm a musician and I know you can't get a good read on brain function from a CT). We'll know official results tomorrow, but the second hand hearsay we got (the neurotech mumbled to fabulous Nurse David who talked to us) is ok, but not devastating. Again, though, we won't know much until tomorrow.
We tried to tackle Dr. Mumtaz in the hall today before my flight, but missed. I've got his number and he has mine, so we'll do a phone date tomorrow to touch base. There are weekly team meetings with all therapists, MDs and case workers which we're allowed to attend, so I'm sending Mom to Dad's first one Thursday.
As far as his vitals, Dad's staying strong. He breathes on his own with a tiny 30% oxygen burst on inhales. He's still got a bit of a temperature, but he's fighting an infection somewhere (we haven't totally found the cause yet). Yawns a lot, moves when something hurts, typical good day stuff.
I flew back to Chicago today with no meltdown upon departure. Now that Dad's in a facility that can really cater to his needs, I feel confident leaving him in their care. Mom's getting into the groove of the commute, and as luck would have it, a good friend of mine from high school and college works in Little Rock healthcare and has graciously offered to help Mom with travel (Thanks, Mo!). I've finally begun to learn some of the nurse and tech names over here, and I've apparently been dubbed "girl with pretty hair." Heck, I'll take it.
Not a bad day at all; the doctors simply didn't meet in the collective powwow we had thought would happen. Dad's main Md, Dr. Mumtaz, has ordered a neurologist consult, and it's a bit counterintuitive to have physical and occupational therapists flinging him around before the head squad's had their say.
The delay was actually great for Mom and I- we've been doing legal housekeeping. My folks have always had separate checking accounts and split the home's expenses. But these pesky things called bills have shown up in Dad's name, and they are due, um...now. So we're working to make it possible for Mom to handle those, and putting my name on a few documents as backup.
We also got a chance to meet with Brenda, our case worker at SSH. We set goals for his stay (1. get him off ventilation, 2. WAKE him) and discussed long term options. She's incredibly nice, and went out of her way to get me a list of facilities so I can start doing research for a possible transfer later.
Earlier today Dad got his first EEG (and it's about flipping time- I've been asking about them for 2 weeks- I'm a musician and I know you can't get a good read on brain function from a CT). We'll know official results tomorrow, but the second hand hearsay we got (the neurotech mumbled to fabulous Nurse David who talked to us) is ok, but not devastating. Again, though, we won't know much until tomorrow.
We tried to tackle Dr. Mumtaz in the hall today before my flight, but missed. I've got his number and he has mine, so we'll do a phone date tomorrow to touch base. There are weekly team meetings with all therapists, MDs and case workers which we're allowed to attend, so I'm sending Mom to Dad's first one Thursday.
As far as his vitals, Dad's staying strong. He breathes on his own with a tiny 30% oxygen burst on inhales. He's still got a bit of a temperature, but he's fighting an infection somewhere (we haven't totally found the cause yet). Yawns a lot, moves when something hurts, typical good day stuff.
I flew back to Chicago today with no meltdown upon departure. Now that Dad's in a facility that can really cater to his needs, I feel confident leaving him in their care. Mom's getting into the groove of the commute, and as luck would have it, a good friend of mine from high school and college works in Little Rock healthcare and has graciously offered to help Mom with travel (Thanks, Mo!). I've finally begun to learn some of the nurse and tech names over here, and I've apparently been dubbed "girl with pretty hair." Heck, I'll take it.
Sunday, November 29, 2009
Sunday surprises
2 big things:
While cleaning off Dad's face with a cool washcloth, he let me know he didn't like it by SHAKING HIS HEAD! I was wiping his mouth and he shook his head back and forth as if to say "no." Only twice, but it was definite. I jumped back- it scared the living haysus out of me. I looked up and Mom's jaw was dropped in shock. I tried to get him to do it a second time, but no dice. Not a problem- I got one, and that's enough.
Also, his nurse Mendy (who we LERVE- she's amazing), told us that he opened his eyes and looked around as she was cleaning and turning him earlier this morning. She talked to him, but he closed his eyes again afterward. Again, that's a head shake and two open eyes! We're in business!
He's still got a fever, so Mendy is running an arsenal of labs to find the cause. A boatload of new blood cultures plus urine tests. If nothing comes out positive for infection, we'll know for sure that the fever's neurological. He'll get his first once-over from SSH's doctors tomorrow, and Mom's given consent for them to do whatever procedures they deem necessary. The next phase of the journey begins tomorrow morning.
While cleaning off Dad's face with a cool washcloth, he let me know he didn't like it by SHAKING HIS HEAD! I was wiping his mouth and he shook his head back and forth as if to say "no." Only twice, but it was definite. I jumped back- it scared the living haysus out of me. I looked up and Mom's jaw was dropped in shock. I tried to get him to do it a second time, but no dice. Not a problem- I got one, and that's enough.
Also, his nurse Mendy (who we LERVE- she's amazing), told us that he opened his eyes and looked around as she was cleaning and turning him earlier this morning. She talked to him, but he closed his eyes again afterward. Again, that's a head shake and two open eyes! We're in business!
He's still got a fever, so Mendy is running an arsenal of labs to find the cause. A boatload of new blood cultures plus urine tests. If nothing comes out positive for infection, we'll know for sure that the fever's neurological. He'll get his first once-over from SSH's doctors tomorrow, and Mom's given consent for them to do whatever procedures they deem necessary. The next phase of the journey begins tomorrow morning.
Saturday, November 28, 2009
Gameday
All quiet here at Chez Vinny. The three of us are watching the Arkansas/LSU game, a post-thanksgiving tradition of sorts. Dad's breathing well, yawning, flinching...all wonderful things. I have the speaker turned up so he can hear the game. By the look on his face, he's not particularly impressed with Mallett's performance so far.
His hospital bed is very fancy- it's got air chambers that inflate/deflate to turn him as needed. Trouble is, it's got a short in it somewhere, so the error alarm goes off once every 15 minutes or so. Mom and I take turns hitting the cancel button. They're sending a technician in Monday to fix it, so only 1 more day of annoyance.
Monday's also the day we get a full team of doctors to do an assessment. They'll most likely order more brain scans and run a few more tests. The resp staff is going to put him on a machine that's a step down from his ventilator and see how he handles it.
...and an 87 yard punt return for LSU? Yeesh. It's only the 2nd quarter! I've got to move Dad's arms anyway, so I'll do it when they call the Hogs (for my non-Arkansas friends, ask me later. It's really best explained in person).
His hospital bed is very fancy- it's got air chambers that inflate/deflate to turn him as needed. Trouble is, it's got a short in it somewhere, so the error alarm goes off once every 15 minutes or so. Mom and I take turns hitting the cancel button. They're sending a technician in Monday to fix it, so only 1 more day of annoyance.
Monday's also the day we get a full team of doctors to do an assessment. They'll most likely order more brain scans and run a few more tests. The resp staff is going to put him on a machine that's a step down from his ventilator and see how he handles it.
...and an 87 yard punt return for LSU? Yeesh. It's only the 2nd quarter! I've got to move Dad's arms anyway, so I'll do it when they call the Hogs (for my non-Arkansas friends, ask me later. It's really best explained in person).
Friday, November 27, 2009
Friday 11/26: New contact info
If you try to go visit Dad at UAMS, you'll be out of luck. We're not there.
Here's Dad's new hospital info:
Select Specialty Hospital
on the campus of St. Vincent Infirmary
2 St. Vincent Circle, 6th Floor
Little Rock, AR 72205
(501) 552-8310
I'll leave his room number off, but you may ask at reception for his location. Visiting hours are 10 am-8 pm only. The staff has been pretty easygoing about visitors, but keep in mind that he's still at risk for infections, so no sniffles or flu recoverers allowed. Mom and I are around most of the day, stepping out for lunch and errands.
He's settling in quite well here. There's more color in his face, he's breathing like a champ and his sleep/wake cycles are becoming more obvious (I can tell when he's sleeping/dreaming, and when he yawns, when his body's alert).
One of his first nurses here generously took the time to go through his chart and medicine list with me. I apparently sounded like I new what I was talking about, because he asked if I was a nurse. I laughed so hard I think it scared Dad.
All in all, thing at Chez Vinny are rocking steady. We've had a steady flow of visitors, and we welcome any that would like to drop by. Keep up the prayers/chants/hopes. They are working.
Here's Dad's new hospital info:
Select Specialty Hospital
on the campus of St. Vincent Infirmary
2 St. Vincent Circle, 6th Floor
Little Rock, AR 72205
(501) 552-8310
I'll leave his room number off, but you may ask at reception for his location. Visiting hours are 10 am-8 pm only. The staff has been pretty easygoing about visitors, but keep in mind that he's still at risk for infections, so no sniffles or flu recoverers allowed. Mom and I are around most of the day, stepping out for lunch and errands.
He's settling in quite well here. There's more color in his face, he's breathing like a champ and his sleep/wake cycles are becoming more obvious (I can tell when he's sleeping/dreaming, and when he yawns, when his body's alert).
One of his first nurses here generously took the time to go through his chart and medicine list with me. I apparently sounded like I new what I was talking about, because he asked if I was a nurse. I laughed so hard I think it scared Dad.
All in all, thing at Chez Vinny are rocking steady. We've had a steady flow of visitors, and we welcome any that would like to drop by. Keep up the prayers/chants/hopes. They are working.
Wednesday, November 25, 2009
Wednesday, 11/25: Moving Day
I knew I was ready to get back to Little Rock today; I had no idea how essential it was until I got here.
Dad's no longer a patient at UAMS. In a meeting this morning with doctors from the neurology, surgery, SICU and social work staff, we were informed that ICU treatment had done everything possible for Dad, and he shouldn't stay any longer. Their primary objective was to get him out of imminent life-threatening danger, and they had succeeded. He is now stable, and the best possible move for him would be to a facility that could focus on the next objective of weaning him off his ventilator and giving his brain further time to mend. Also, with a high-traffic intensive care unit, the longer he's there, the longer he's at risk for contracting infections, pneumonia, and whatever else walks in the door (an elderly woman a few doors away from his room was brought in with H1N1 last week). Also, it's sort of an unspoken that the good ICU discharge window is 2-3 weeks.
We were moved this afternoon to Select Specialty Hospital, operating out of the 6th floor of St Vincent's Infirmary Hospital (at Markham and University in LR). It's not another ICU, but rather a long term acute care (LTAC) facility. Here the foot traffic is not as heavy, and the staff is smaller and a bit more specialized. He has 2 respiratory therapists who are monitoring him in rotation, both former ICU resp staff. Dad breathes completely on his own, but it's through his trach ventilator which needs monitoring. He'll also be receiving more aggressive physical therapy, and staff will also be more aggressive in trying to obtain a neurological response. Sounds intense, but it's good- he's to a point now that we need to start pushing his limits and see how he reacts.
One drawback (or bonus, depending on how you see it) is that we no longer have round-the-clock access to Dad. SSH does not allow any visitors between 8pm-10am. There's a family waiting area, but it's much smaller and not designed for overnight stay. While we know we won't be staying overnight in the hospital much anymore, neither of us could bear to be far from him on the first night in his new digs at Chez Vinny (that's what I've dubbed the hospital- you've gotta have fun with it). We've checked into the Guesthouse Inn on St Vincent's campus for the night. And boy, did we need it. For the first time since the accident 2 weeks ago, Mom's sleeping in a real bed (and snoring. infinitely more than her usual symphonic range, but it's wonderful because I know she's really resting). It's been nice, given the whirlwind of today's venue change, to be alone in a private hotel room with real beds and a tv.
Tomorrow we'll spend the day with Dad and plan for the next week. We've officially moved into a new stage, but it's one we weren't planning for so soon. We may come home for some time tomorrow, but nothing's definite.
Bottom line: Dad's in the best place he could be for right now. He's on no sedatives, he breathes on his own, and he yawns like a lion as part of his coma's sleep/wake cycle (it's adorable). His eyelids flutter (yes, both!), he coughs a lot (which is good- he's clearing his lungs of debris), and he moves all limbs when he gets irritated. Now we wait...more. But with a slightly different purpose, and the exact same faith that he'll keep improving.
Dad's no longer a patient at UAMS. In a meeting this morning with doctors from the neurology, surgery, SICU and social work staff, we were informed that ICU treatment had done everything possible for Dad, and he shouldn't stay any longer. Their primary objective was to get him out of imminent life-threatening danger, and they had succeeded. He is now stable, and the best possible move for him would be to a facility that could focus on the next objective of weaning him off his ventilator and giving his brain further time to mend. Also, with a high-traffic intensive care unit, the longer he's there, the longer he's at risk for contracting infections, pneumonia, and whatever else walks in the door (an elderly woman a few doors away from his room was brought in with H1N1 last week). Also, it's sort of an unspoken that the good ICU discharge window is 2-3 weeks.
We were moved this afternoon to Select Specialty Hospital, operating out of the 6th floor of St Vincent's Infirmary Hospital (at Markham and University in LR). It's not another ICU, but rather a long term acute care (LTAC) facility. Here the foot traffic is not as heavy, and the staff is smaller and a bit more specialized. He has 2 respiratory therapists who are monitoring him in rotation, both former ICU resp staff. Dad breathes completely on his own, but it's through his trach ventilator which needs monitoring. He'll also be receiving more aggressive physical therapy, and staff will also be more aggressive in trying to obtain a neurological response. Sounds intense, but it's good- he's to a point now that we need to start pushing his limits and see how he reacts.
One drawback (or bonus, depending on how you see it) is that we no longer have round-the-clock access to Dad. SSH does not allow any visitors between 8pm-10am. There's a family waiting area, but it's much smaller and not designed for overnight stay. While we know we won't be staying overnight in the hospital much anymore, neither of us could bear to be far from him on the first night in his new digs at Chez Vinny (that's what I've dubbed the hospital- you've gotta have fun with it). We've checked into the Guesthouse Inn on St Vincent's campus for the night. And boy, did we need it. For the first time since the accident 2 weeks ago, Mom's sleeping in a real bed (and snoring. infinitely more than her usual symphonic range, but it's wonderful because I know she's really resting). It's been nice, given the whirlwind of today's venue change, to be alone in a private hotel room with real beds and a tv.
Tomorrow we'll spend the day with Dad and plan for the next week. We've officially moved into a new stage, but it's one we weren't planning for so soon. We may come home for some time tomorrow, but nothing's definite.
Bottom line: Dad's in the best place he could be for right now. He's on no sedatives, he breathes on his own, and he yawns like a lion as part of his coma's sleep/wake cycle (it's adorable). His eyelids flutter (yes, both!), he coughs a lot (which is good- he's clearing his lungs of debris), and he moves all limbs when he gets irritated. Now we wait...more. But with a slightly different purpose, and the exact same faith that he'll keep improving.
Tuesday, November 24, 2009
Tuesday, 11/24
For a guy in a coma, Dad's sure making progress.
He's breathing almost completely on his own. His heart rate is normal, except when he hears Mom reading to him, when it accelerates (read: he's in there). His circulation is still improving, and I can't wait to see him tomorrow.
I was called by Dr. Wagner today to grant consent for a small procedure. They've implanted an IVC in one of his veins. Because he's laying still and not moving around, he's at a higher risk for blood clots, specifically in his legs. Should one of those travel to his heart, it could get passed rather quickly to his lung, resulting in a pulmonary embolism. These are incredibly dangerous and could be fatal (I lost a singer friend of mine to one of those earlier this year). The IVC will act somewhat like a sieve, allowing blood but not clots to pass back up to his heart. I granted consent, and the procedure was completed seamlessly before 6 pm.
Tracy, his day nurse, gave him a great report, as did Kelly, a new evening nurse. Again, our outlook is positive. We must, because the alternative robs us of our sanity. We understand the length of this process, but we know the amount of fight he has in him. Besides, after surviving as much as he has, and defying countless predictions, how do you not have faith?
He's breathing almost completely on his own. His heart rate is normal, except when he hears Mom reading to him, when it accelerates (read: he's in there). His circulation is still improving, and I can't wait to see him tomorrow.
I was called by Dr. Wagner today to grant consent for a small procedure. They've implanted an IVC in one of his veins. Because he's laying still and not moving around, he's at a higher risk for blood clots, specifically in his legs. Should one of those travel to his heart, it could get passed rather quickly to his lung, resulting in a pulmonary embolism. These are incredibly dangerous and could be fatal (I lost a singer friend of mine to one of those earlier this year). The IVC will act somewhat like a sieve, allowing blood but not clots to pass back up to his heart. I granted consent, and the procedure was completed seamlessly before 6 pm.
Tracy, his day nurse, gave him a great report, as did Kelly, a new evening nurse. Again, our outlook is positive. We must, because the alternative robs us of our sanity. We understand the length of this process, but we know the amount of fight he has in him. Besides, after surviving as much as he has, and defying countless predictions, how do you not have faith?
Sunday, November 22, 2009
11/22: Sunday Funday
There was no post yesterday for 2 reasons. 1. There wasn't much to report. Dad's vitals didn't change much, but all is good and stable. 2. Ashlee had a final rehearsal for the opera tonight, and when she got home she slept. She was so tired that she spoke of herself in third person.
I did have an amazing conversation with Mikal, Dad's nurse. She's the one Mom and I love to pieces- she also used to ride bikes, so she sympathizes with our situation. She put some things in perspective for me. As trite as it sounds, one of her phrases hasn't left my head: "Life changes, but it does go on."
Mom and I are still getting used to what is now our new normal: stats, temps, bodily fluid discussions that aren't even our own. She managed to go home for a few hours yesterday, and I'm so proud. If you see her before I do, make sure she's taking care of herself.
Dad breathed all by himself today on a CPAP machine. And that, my friends, is what we call progress! The nurses also convinced Mom that Dad's beard had to go. It's getting too long, and soon it will interfere with the trach collar, which would cause him even more discomfort. They had makeover day this morning, and Mikal sent me a shot of dad from her camera phone...c'est adrorable! Less Grizzly Adams, more Timbo circa 2002. They did a pretty good job; very few nicks.
This morning at mass at Church of the Ascension, I was thinking of not just my own father, but the patriarch of the McSheehy family in Russellville. His daughter was a friend of mine from college, and he passed yesterday morning. When you have your next spiritual moment, please send some of the good wishes you have for my father to their family so that they find peace and comfort during their grief.
Again, today is a good day for Dad. He's holding is own, which is exactly what we want for now. I'm heading to my modern opera with Vox3/Eclipse Theatre Co, where I'll be screaming above the staff as Esther Dudley in Democracy. I'll record it because my mother wants it for Dad, but my character is the daughter of an agnostic who's trying to decide if she wants to marry and Anglican priest in post-Civil War America. Not sure how my pitched religious arguments will go with the Temptations and Gladys Knight, but I'll work on it.
I did have an amazing conversation with Mikal, Dad's nurse. She's the one Mom and I love to pieces- she also used to ride bikes, so she sympathizes with our situation. She put some things in perspective for me. As trite as it sounds, one of her phrases hasn't left my head: "Life changes, but it does go on."
Mom and I are still getting used to what is now our new normal: stats, temps, bodily fluid discussions that aren't even our own. She managed to go home for a few hours yesterday, and I'm so proud. If you see her before I do, make sure she's taking care of herself.
Dad breathed all by himself today on a CPAP machine. And that, my friends, is what we call progress! The nurses also convinced Mom that Dad's beard had to go. It's getting too long, and soon it will interfere with the trach collar, which would cause him even more discomfort. They had makeover day this morning, and Mikal sent me a shot of dad from her camera phone...c'est adrorable! Less Grizzly Adams, more Timbo circa 2002. They did a pretty good job; very few nicks.
This morning at mass at Church of the Ascension, I was thinking of not just my own father, but the patriarch of the McSheehy family in Russellville. His daughter was a friend of mine from college, and he passed yesterday morning. When you have your next spiritual moment, please send some of the good wishes you have for my father to their family so that they find peace and comfort during their grief.
Again, today is a good day for Dad. He's holding is own, which is exactly what we want for now. I'm heading to my modern opera with Vox3/Eclipse Theatre Co, where I'll be screaming above the staff as Esther Dudley in Democracy. I'll record it because my mother wants it for Dad, but my character is the daughter of an agnostic who's trying to decide if she wants to marry and Anglican priest in post-Civil War America. Not sure how my pitched religious arguments will go with the Temptations and Gladys Knight, but I'll work on it.
Friday, November 20, 2009
Friday, 11/20
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(&!#$.......GLORIA!!!!!"
This moment equally cracks me up and comforts me, because I know it will happen. He's in great shape today. The nurses reduced his pain medication today and guess what? More wiggling. Peggy's been his day nurse for 3 days in a row now, and she's learning the groove of Mom's series of questions. The resp staff added more moisture to his breathing equipment so his intake isn't drying him out as much as before. His levels jumped a bit while they were working on hm, but were back to normal after he'd had time to rest.
Rest. Hopefully Mom will get some of that tonight. Heck, maybe I will too.
We have specific routines at home, and everything in his world is done with a system, exerting as little effort as possible (he's not lazy, he's just got his own brand of "efficient"). The lights are at a certain brightness, the coffee comes on at a certain time, and the pillows in dad's recliner sit a certain way, otherwise his back hurts and he gets irritated. This miraculous, cinematic moment when my father comes out of his current fog of a state will be about 2 seconds long. He'll then notice all the stuff sticking to him, and feel the stiffness of sitting in the same position for who knows how long. While Mom and I weeping and praising all the powers above, Dad will look around and say, "What in the Sam Hill is going on in the M*&@^D(&!#$.......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.
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.
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