Sometimes I Get My Head in a Dilly

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Ro* and Dr. Mark Abel, 1 year later.

We brought her home one year ago. Driving every bit as carefully as the day she was born, Ellen and I made our way from UVA Medical Center with Ro* seatbelted in the backseat. Surrounded by pillows and wearing a hard plastic torso brace, she had eaten almost no solid food in two weeks.

A year has passed. One year of watching her recovery and silently panicking every time she rode her bike or scooter, or played with her friends, or even just slung her school backpack over her shoulder.

When we went back to Kluge, Ro's top priority question was, "Which rides can I go on at Hershey Park during the school trip next month?" Dr. Abel's answer was a quite satisfactory, "All of them."

We had so much help and love and support to get us through, and for that I am eternally and humbly grateful. Through this whole ordeal, there were a lot of very, truly, deeply hard times, but not once did things go dark. Not once was there ever really a shark in the water.

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3 Months After First Surgery

Summer In America

Yeah, the date says April, but 94º and sunny is summer. Em came out and stayed the weekend. She brought Spudnuts! Ro* and Ellen and Em went shopping while I strove to tame the land about us. Dave and Kelly hung out at our place, then we returned the favor. Lots of food and laughing. This was the first normal weekend we've had in a while, and it was so good.

Yes, of course there's still a lot of recovering to do, and we dote on Ro* much more than she would like. The difference is subtle, but enormous; If any of us has to pee, we walk ourselves to the bog and have at it. The only pain medications around are white Russians. And nobody is paralyzed, with dicey odds on whether or not it's temporary. On top of this, there's an awful lot to the notion of knowing that you have people - friends and family who will back you up when you need it most, and just kick your ass at board games when things are chill.

This weekend is the anniversary of my grandmother's passing, and she has been all over my mind. There are echoes of her influences everywhere. Much of my own ability to take things in stride can be traced directly back to her. The last time I saw her, she said Ro* was a dancer, and she gave me strict orders to take good care of her. Then she took my hand, looked me in the eyes, and said goodbye. She had three beautiful daughters, and one of them is my mom. We have good people.

Photo by granddaughter Lauren Szafran Lally

My my my, it's a beautiful world.

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March 31 to April 25

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Wee're Number One

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Some of y'all started coming here for updates on Ro*. When we post stuff about other things, you get a little impatient. We understand, and we'll try to include Ro* information, or "Ro*Fo" , within our other updates. Let's try it out:

Ro* was very pleased to watch her Washington Nationals take their second win in a row against the stinkin' Braves. She could have done without the heart attack drama in the top of the 9th, when the closer walked the leadoff batter, then gave up a double. With 2nd and 3rd bases juiced and no outs, it was looking like yet another Hanrahan Heartbreaker. But wait ... what's this?!? They get three outs and win the game!

Everyone was inspired, but none so much as Ro* - so much so, that she urinated on her own today to celebrate. Yep. She whizzed. She made her bladder gladder. She micturated. She achieved emiction. Life gave her lemons, and she made lemonade. For the first time in 23 days, she

voided

without the assistance (intrusion) of various implements and people.

We're happier about this than we were when she went in the potty for the first time. Here's the thing; ever since we left the hospital, and moreso with each passing day, her lack of production was becoming more and more abnormal. For a few days, or even more, it's easy to blame the various drugs. Then you move to recovery from the surgery as a rationale. As time passed though, the possibilty of nerve damage loomed ever larger. Nobody uttered the words "bladder paralysis", but we all quietly googled it and obsessed about it in the wee dark hours of the night. Nobody wanted to think about it, just like nobody wanted to think about Joel Hanrahan's growing habit of blowing ballgames (see how I brought that back around?)

Tonight, we will celebrate Pee and Poo Independence Day with Chinese food, followed by a special Potty Cake. At Ro's suggestion, it's a yellow cake, with chocolate frosting.

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- Then we will watch the final game of the Nats/Braves series. Hopefully, Atlanta will piss away another one.

All Terrain Physical Therapy

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She still has to lie down to rest a lot, but this kid knows how to push the envelope.

Void Where Prohibited

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Still pushing clear fluids, and watchful for any signs of UTI. Nothing else to report.








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They Put Our Bidness In The Street

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Last Friday morning:
7:00 am - Dr. Abel and his Posse came in to our little hospital room and said, "why don't you guys go home?"

10:00 am - All the papers were in order, the room packed up, ready to roll out of there.
11:00 am
12:00 pm
1:00 pm
1:25 pm
1:49 pm
2:14 pm
2:20 pm
2:23 pm
2:28 pm
2:32 pm
2:34 pm
2:35 pm - And off we go.

*****

~~~ Either Dead Or Home ~~~

The two hour ride from UVA home was tricky, but we made it. Ro is doing really well at home. She has a day bed in the living room and a night bed in her bedroom. She is managing pain with nothing more than children's Tylenol. When she's sitting or standing, she wears a hard torso brace, and that will be the case until the end of June. She hates the brace, and the brace hates her. It's a thing they have.

Sorry for the delay in updating. Things are pretty busy post-hospital. Lots of people have been inquiring, but none have put it quite like the email from mom:


Subject: Ro*
Date: April 12, 2009 2:25:21 PM EDT

How are you all? Did she void on her own yet?
Happy Easter!
Are you ever going to blog again and tell folks Ro* is home?
They will think she is either dead or home!
Love, Mom*

So for any of you who were concerned about Ro's status upon this mortal coil, I can assure you that - who says "void"? She's doing great. Watching a boatload of TV, but great. As soon as she voids, I'll issue a press release.





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Dammit Baby

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When babies start toddling, it's hard work. Their muscles aren't tuned to standing up and putting one foot in front of the other. Even though it's frustrating, hard work, they really want to stand up. That's where we are today. Ro has been on a bed since last Tuesday. Since then, her center of balance has been scuttled. All her muscles now have to learn to work with this new structure. She has eaten almost nothing and her legs are weakened. It's frustrating, hard work, but she really wants to do it.

Ro laid in her hospital bed this morning and listened as the doctors talked abstractly about getting up and moving around. It will help get the body functions going. And eat something ... something healthy. Do you like yogurt? Ro lay with a pillow mostly hiding an angry scowl. The sun was coming up after a night of impossiblitilies; can't get into a comfortable position, can't do anything independently, can even use the toilet. She was fuming as this doc stood on his two legs and said oh just eat and walk around and go to the can, you know?

When babies start walking, they have a hard time, and they invariably fall down. Most of them cry until somebody helps them, but a few get pissed off, and you can almost see them saying "dammit". Sometimes they punch at whatever threw them off balance. Then they go again. Ro is a Dammit Baby.




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No News Is Good News. And Annoying.

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Hey playuhs. The lack of blog updates is due to an increased task list
and the need to sleep. Things are going pretty well during Ro's
recovery. I promise to dish details soon.

Sent from mobile

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We're Out Of The Woods, But It's A Long Walk Home.

Well Planned

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Within about three hours, Ro should be able to focus. Within six, she'll have watched John Lannan and her Washington Nationals beat The Florida Marlins. Major surgery gives Opening Day a whole new meaning. It's going to be a great season.

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Almost Post-op

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12:10

Med Student Extraordinaire and soon-to-be Resident Anjahn just came up to the waiting room lounge. They are closing at this moment. The surgery went very well, with no neurologial interruptions. Anjahn was in the operating theatre to observe. He's been closely involved with Ro throughout this process. He took phone pics during the surgery and shared them with us (no - I won't).

We are now awaiting an official briefing from the surgeons. Ro will be taken back to our old friends in PICU, where we will be able to see her very soon. This time around, she will be knocked-out cold, and will come out of anesthesia very slowly. Take your time, darlin'. More soon.

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Addendum: I was wrong wrong wrong. She is awake and alert and in every bit of the same kind of pain as the first post-op. I feel horrible, because I told her to expect an easier ride. This is so so hard.

Ro Cool

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As they wheeled her into the O.R. for the second time in a week, she flashed an I Love You sign, followed by peace sign.

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Quick Update

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The phone rang in the waiting room just after 9:00 am. Just a call to let us know that surgery was underway. The expectation is that she'll be in for three to four hours today. Much of the heavy work was done in the first procedure.

What's left, to be very basic about it, because that's all I can be, is to attach the two titanium rods to the spine. The rods attach to screws that were put into individual vertebrae last week. Today's work will be a very deliberate effort to coax the spinal column into position and attach the rods on vertebra at a time.

We are very comfortable with the team of docs and nurses on this job. Their combination of humanity and competence is on a level we've never witnessed close-up. It's a privilege, an honor, and a true gift to have access to their skills.

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Go Time

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Something happened somewhere else and patient we never met did not go
into surgery early this morning. Dr. Abel, not one to sit idle, said,
"let's get that cool kid in here and get going." Ro went into pre-op
at 8:00. More when we know.

~~~

Sent from mobile

UVA Medical Center WiFi Guest 167 Logging In

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"Sweetie, you want me to read to you some more?"
"hmmmm ... what time is it Dad?"
"11:30 at night."
"You were right. My body clock stopped. Sure, maybe half a chapter."

Tonight has been much better than the last night. We've both gotten a few more naps, and pain management has worked out a lot better. Nurse Rachel (our second nurse Rachel) just left. We've done a lot of sleeping position changes this evening - back, to right side, to back, to left side. It seems to help ease the pain a bit. I just helped her roll flat again.
"Are you chilly?"
"No. Maybe a little."
It's cool in the room, but this was a first. Having a sheet has almost been too much for her. I gave her a blanket.
"Do you want me to read to you some more?"
"No. Sing me a song." She grabbed my finger in her hand.
"Ok then. " I started into True Love Ways by Buddy Holly because she likes that one, but she cut me off.
"You Are My Sunshine," she said.
As the song was ending, she gazed at the balloons that came from Jane and the girls. I segued into more stuff about sunshine, but I could only muster the chorus. As I repeated it over and over, she drifted off to sleep.

Weave, weave, weave me the sunshine
Out of the pouring rain
Weave me the hope of a new tomorrow
and fill my cup again.




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GTIF. Good Thing It's Friday

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Close your eyes for a moment and imagine being 12 - don't worry, the internet will still be here when you open them again. You're 12 years old, and you're in a room with your parents. You're in that room together for 24 hours a day and for four solid days. With your parents. You're forced to stay in a bed while their faces hover a couple of feet above you, telling you what a trooper you are.
Crazy yet? No?
How about we add in the worst pain of your life.
Now? No?
WOW! YOU REALLY ARE A TROOPER! LOOK AT YOU!!
Let's take away that morphine you've been slurping on.
How about now? Looking for this?

We've gotten lots of positive news today.

I don't care about your news.

This morning, the two hugely uncomfortable drains in her back were removed. The arterial line is also gone. Ro's temperature is down to normal range. Her breathing and leg exercises are coming along very well. After talking with the good doctor this morning, it was decided that she would be fitted for a hard plastic brace instead of going back into traction for the days leading up to Surgery II - The Empire Strikes The Back. It's no flowing gossamer gown, but the brace is aces up against re-applying the ice tongs to either side of your head for traction. One big benefit of the brace is that it will allow Ro to sit up in bed, which is handy for a lot of things. I won't go into it.


So long, artline.

This evening, we officially ruled out one other potentially big problem: The lack of productivity in the area of bowel movement is now definitely attributed to Ro's morphine habit that she picked up in the Nam. A side-worry was that the paralysis symptoms exhibited in her foot may also be playing havoc in her intestines. Not the case. Ruled out. All good, except that I went into it.

The switch from sweet sweet morphine to vicodin today has been rough, but the itch is going away, the nauseous feeling is subsiding, and the strike has ended at the Crap Factory. Production is scheduled to resume anytime now. Now all we have to do is have another back surgery. That won't be too bad for a trooper like Ro*. My God, I AM annoying.



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They're Moving Us Again, Again

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It's about 7:00 on Friday morning and Ellen and I are awaiting rounds. We've developed a strategy for getting the most out of Dr. Abel and all his hangers on while they're showering attention on our patient. Ellen asks questions and I take notes. Brilliant, I know. It's taken us the better part of a week to develop and perfect this technique.

Meanwhile, in the news, we were on the move again yesterday. We got turfed out of PICU and down the hall to Acute Care. After the Tuesday Waiting Room Incident, we were anxious when we heard the rumblings of an impending move. Having been trapped in PICU for a while, we had developed a bit of Stockholm Syndrome for the people there.

Soon after we were moved to the new settlement, we realized the advantages and the reasons for the move. The new room is much more quiet, it has it's own bathroom with a camper-style shower, it has a TV with a DVD player to watch The IT Crowd (thanks John), the parent slab is even slightly better. The reasons they moved us are good as well; Ro isn't as needful of the PICU nurses as the other kids who were in there, and she's at less risk of various infections by being where we are now. At this stage of the game, infection is a huge risk, which is why I've become a Door Nazi. Nobody comes in without washing hands first. Nobody comes in unless it's for patient care. Ro really likes the singing balloon that Ellen M sent, but the delivery dude didn't make the cut for entry and was greeted outside the door. The little production our VTC family put together was brilliant - and germ free.

Ro is making the rest of us look like punks. She's managing so much pain and so many drugs, needles, drains and other necessary evils, and she's doing it with uncanny poise. It's been a tough 24 hours. She's been exercising her lungs and moving her legs and doing a lot of other things that are really really hard work.

We deeply discourage in-person visitors at this point, not only because of the infection risks, but also because Ro would prefer it to be that way. She wants a shower and a chance to brush her hair before holding court. Also, she'd like to remember that she saw you, and that's hard to do when you're busy working out minute-to-minute living.

If you'd like to send her a note, please do. Ellen and I promise she will get it. You can send it to my email or Ellen's. We also read her notes from the comments section here. UVA also has a nice e-card system HERE. The nurses will print your card and deliver it to Ro. The very best gift you can send is words. She likes having us read emails to her, and sometimes she dictates replies (but no promises ... sometimes she dozes off in the middle).

Docs are here. More news in a shorty.




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