Trip to the hospital

ROAD TRIP!

Dad's going to make a quick jaunt to the hospital- nothing serious, though.

Since the accident, he's been wearing a cervical collar to protect the teeny fractures in his collarbone/neck/jaw. Most of the time patients are allowed to take them off once they can say "Hey, this doesn't hurt anymore." Since that option's not currently available to us, we have to rely on CT scans to let us know if he's all good.

We'll know later today if we can take that off. Once it's off, there will be less pressure on his neck, less insulation near his head to contribute to his body temperature, etc. I'll keep you posted.

In other news, there's been a fund set up to help with my Dad's medical expenses. I'll get you the info soon.

Call for Help: Help us find her!

There is a woman to whom we owe my father's survival. We'd like to find her.

The morning of the accident: Tuesday, November 10, 2:45 am. A nurse on her way home early from a shift at St. Mary's hospital found my father at the accident scene, before paramedics arrived. She was the one who noticed that his airway was obstructed and opened it, which is the only thing that allowed him to breathe/have any oxygen to his brain. If it were not for this woman, we would've had a funeral later that week.

I have no idea who or where she is, or what I'm going to say to her, but I MUST find her. I'm 800 miles and 2 states away so I need your help. I believe her name was a "J." Jennifer/Jessica, perhaps? From what we've been told, she's a nurse at St. Mary's hospital, and perhaps lives outside of Dover or in Hector along Highway 27.

If you can help me find her, or if you let her know I'm looking for her, please send me a private email: ashleehardgrave@gmail.com.

I must thank this woman for the joy she's brought to our lives. Yes, you read that right: joy. She made it possible for me to still have my father. She's helped me see a beauty and strength in my mother I never thought imaginable. She brought my family, my friends and my community together in an incredible demonstration of love. She gave me hope.

Happy Birthday Daddy!

Today is my father's 60th birthday!

Birthdays are always a big deal in my family: since Dad's and mine are thirty years minus two days apart, we've always had joint celebrations (7 & 37, etc). The fun lasts the entire month of February, and Mom's is all July long. This year is 30 & 60, and I'm more grateful than ever to share it with him.

To celebrate this day and how many people my Dad has touched, comforted or just plain cracked up, I'd like to extend this challenge to you: Leave a comment here today with a fond or funny memory you have of Timbo. I love hearing stories about him, no matter how ridiculous. I'll read them to him when I talk to him later tonight.

There are so many for me, from singing and dancing to Sam Cooke in the living room to pretending to ignore my aunt Violet's wheezing in her later years. But for today, here's mine:

Summer in Arkansas is one of the grossest things imaginable; the humidity is approximately a thousand percent. The moment you walk outside you feel as if a warm wet blanket is thrown at your face. The great thing about all this moisture is that your yard grows lush and green, but you have to mow it constantly. All that heat and moisture, combined with the rural land our house is built on, equals snakes. Lots of them. That's the other reason you need to mow frequently- don't give them any more places to hide.

It's summer. I'm eight years old, maybe nine. Dad had been mowing for an hour and was loopy from heat exhaustion. Mom went out to relieve him and he sat down with a glass of sweet tea. Not a minute and a half later, Mom came running in the house, screaming and flailing her arms Muppet-style above her head. She had seen a garden snake in the mower's path and flipped. This was the conversation:

Mom: "TIIIIIIIIIMMMMMM! It's a SNAAAAAAAAKE!"
Dad: "Shiminey, Gloria, calm down. What did it look like?"
Mom: "Ii-i-it was green, and-"
Dad:"--you came screaming in her for a dang garden snake? You skeered me so much I thought it was a copperhead."
Mom: "I don't care, Tim, it's still a snake!"
Dad: "No, it's not, it's nothing. Just get back out there and run over it."
Mom: "OOOOHHHHHHHHH MAAAAAAAAAH GOOOOOOOD No! I can't!"
Dad: "Why the heck not?"
Mom: "Well, won't it jump up and try to bite me?"
Dad: "No, Gloria, he'll stand up and fight like a man. Now go."

House Warming

Dad's in his new digs, all snug and sound. Mom's been with him since he arrived- he's got a different breathing tube in his trach and she's not comfortable leaving until she knows the darn thing will stay on.

It's a lovely facility. He's safe and he's home. As soon as I have the ok from Mom and the home I'll post his info so you can visit. Here's the deal: because he's not in skilled nursing, it's up to US to help him recover brain activity. He's going to need lots of stimulation from lots of familiar voices. I need your help with this. Keep this in mind. But for now, be thankful with me that he's home.

Playing Catch Up

Well guess what? We didn't get answers later that day. Or week. Or month.

A lot has happened since I left you, and somehow very little has happened. I visited my parents two weekends ago, and here's where we were:

The infection on NYE wiped out every ounce of progress Dad had made, but he had started to pick up again. By the time I got there on Jan 22, he was, developmentally-speaking, almost where he was when I left on December 28. Not a bad thing, but the glacial pace of the progress can get discouraging. SSH hospital was ready to release him, because he was finally stable and they felt they had done all possible. The natural progression was to be to a skilled nursing facility...which might have been a possibility had he not almost died from infection on Dec 31. He had exhibited enough progress then to be moved to SkN, but that was no longer the case.

We worked with Dad's insurance company (name to be protected, but let's just say it rhymes with "Who Flossed the New Field") to find out our options. WFNF was supportive of sending him to skilled nursing, ready to write a check. Doctors and officials from the hospital let WFNF know Dad's state, and they backed out. Oh, we could still send him...but Mom and I would pay the full ticket ourselves. In the end, SkN was not the best place for him, because he can't follow the "squeeze my hand" commands with 100% accuracy. So on to the next option.

Oh wait...there WASN'T one. Not according to WFNF.

At that point we had one option: sending him to a nursing home. There's technically a second: bringing him home and having round the clock care/staff (HA! No- my millionaire dating club membership's expired, sorry), but not really. So on to nursing home shopping.

We'd found comfort at a few facilities when we looked for skilled nursing, so we approached them first. Literally no room at the inn. At 4 different facilities. We finally found some places that had a space available, but when they found out about our healthcare coverage we were once again turned away; they didn't accept private insurance, only Medicare and Medicaid. And once WFNF got wind of our only option being a nursing home, they made sure to let us know they wouldn't be helping with that.

I see. So to review: he's got "full" coverage that he's paid into for for almost 20 years with no more than an office visit for a sniffle. He's too young for Medicare and too "wealthy" for Medicaid (again, ha. He simply lives above the poverty line). So because we're responsible Americans and pay our own way, versus joining in the bankrupting of an already bloated and abused government program, we've got to either sell kidneys to pay for a nurse or just wheel him down the damn street ourselves and hope he hangs in there?

Oh, disability! Of course! When and where do we get that? Ok, sure I've got time for these 60,000 papers. And when do we find out if he qualifies....? Oh, yeah, 3-5 months. Got it. But once he gets disability benefits, he can get Medicare according to the loophole, right? Awesome, and how long does that take....up to 2 years? Ok. Sure. Excuse me while I wheel him down the street, as we can't afford the ambulance any longer.

Anyone who dares to tell me that this nation's healthcare system doesn't need repairing will meet the business end of my fist. We've been painted into every corner imaginable, all the while there's that whole "keeping Dad alive" thing that we're working on.

Mom drives 160 miles to see him every single day. This has been her new normal. The only people she talks to on a regular basis are me and Dad's daily nurse, whoever that is. Well, and Dad, but he's not so chatty lately. She's put god knows how many miles on her car and questionable tires. Our primary objective has been to get him home, whatever the cost. Every day that goes by is exhausting. We've been at the breaking point.

So finally, after a little sweet talking and good-ole-boy hometown insiders politicking, we have FINALLY found him a new home. It's only 20 minutes from home, so Mom won't be on the road 3 hours a day. Once she sees a level of comfort from the facility, she might -gasp- even go back to work. The facility is brand new and the staff already has experience with patients like Dad. It really couldn't be a better fit.

We found the place last week, so guess what! More waiting. Clear this, verify these, approve that. "We'll move him Friday." That was last week. Thanks to the weekend ice storm, that didn't happen. Pushed to Monday. Nope! Got to run eighty bazillion brain scans and tests.

Finally, after weeks of rushing, waiting, red tape, and doors slamming in our face. I JUST received a call from my mother. Dad's in a MEMS van en route to his new home. Mom's driving behind them and will let me know when they get there.

We have no idea how we're going to pay for it.

But we don't care. We just want him home. We'll figure it out. Dad magically got a Medicaid card in the mail somehow, so as long as that's valid, we're set for a bit. We are very mindful that things happened in the order they did for a purpose, and that as long as we are prepared and open, we will make it as a family. Now...off to buy a lotto ticket.

Monkey Wrench

Tis the time to throw one, apparently.

First, he wasn't well enough to transport. Then he was. Then the place we wanted to send him wouldn't take him because he wasn't well enough. Then they would take him, but not through insurance (and I've only got 2 kidneys for the black market...). Then a guy from the same place was in his room evaluating him today for a possible transfer.

Je suis troublé. Je ne comprend pas.

Hopefully I'll get some things straightened out when I arrive tomorrow.

Fingers Crossed!

Mom called me tonight with great news: Dr. Mumtaz is planning to forge ahead with Dad's transfer closer to home, and it may happen as soon as this week when I'm there!

Cross your fingers, hope, throw salt over your shoulder, whatever. We need to get him home.

Home Time!

Well, for me.

My mom's been awesome enough to help me find a way to get home this weekend, and I'm so grateful and excited. I'm flying in Friday and leaving WAY too early Monday morning. Can't wait!

Dad's doing ok. Not a ton of movement/changes, but that's ok for now. The ventilator was finally wheeled out of his room again, which is a step in the right direction. I'm hoping to have him back in Russellville by his 60th birthday on February 9.

Again, keep believing that this will get better. I'm trying, and most of the time I've got it.

Rough Day

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 ;)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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).