No Place Like Home

Loaded and ready.

It seems that Dorothy was right.  There is no place like home, and Camille finally made it.   

Last Wednesday and Thursday left Miss C with many to-do’s on her list in order to get signed off for discharge.  Progress was thwarted a bit by foot swelling, which prompted cutting her left cast this time to relieve pressure (#groundhogday), but when all was said and done, by Friday at noon, she had all of her tubes out, was re-casted in Creighton Blue on both legs from the knee down, and was transitioned to oral pain medications and ready to literally slide into the Honda Odyssey to make the trek back to Omaha.  The lights of home never looked so good, until Bill and I managed to thoroughly traumatize Camille, Livvy, Jack and Vinny in the process of trying to get her inside the house.  Yet, as life would have it, Saturday was a new day and Camille has rocked her recovery in typical Camille style ever since. 

Many have asked for updates, and I have been quite the slacker in providing them.  Somehow, time in the hospital passes so quickly; as it so happens, when one comes home to two other kids, a dog, and a life to maintain, life goes even faster. 

Truth be told, things are going better than expected, and I expect that being home has perked our girl up quite a bit.  We knew that pain tolerance was a superhuman trick of hers--I sometimes wonder if her glaucoma as a toddler did some kind of wacky reset.  Regardless, we were determined that she wouldn’t feel inclined to play the hero, but she was truly ready to ditch her muscle relaxants yesterday and decided herself to wean off of the daytime narcs today, so subsisted on Tylenol alone during her waking hours.  After our less-than-graceful attempt at getting her settled Friday night, we were a bit concerned with how transitions in and out of bed would go, but we’ve settled into a routine and the girl is nearly taking care of things on her own with only leg support thanks to her always amazing upper body strength.  She will certainly have enviable upper body musculature by the time all is said and done. 

With her best caregiver AND a super yummy
surprise from Sara and Joe. 

Tomorrow, we try to settle back into more of a rhythm.  Bill and I will take turns working and staying home; we are terribly fortunate to have supportive gigs.  Camille will also ease back into the routine of school, thankfully provided at home until Christmas break by a school district and team who have just championed her cause and come to see her for the bright and committed student she is.  We are inexplicably grateful for the way her team has rallied around her. 

We are equally grateful for our tribe of people who have been physically and remotely present for her and for us.  My parents held down the home-front here last week.  We were graced by a meal coordinated and delivered to the hospital in St. Paul by Lisa and our Framily at Outlook Nebraska (!).  Sara (our past nanny and forever friend) and her husband, Joe, had a super yummy edible arrangement delivered to our house Saturday to brighten the mood.  Aunt Sissy was, as always, our constant yesterday and today, relieving me so I could go watch Jack play some basketball and generally doing the spirit-lifting that she always pulls off so effortlessly.

  

Calls, messages and care packages from so many have lifted our girl so high and made her feel the love.   Jack has doted on her and certainly been her sports-watching companion.  Vinny has sufficiently sniffed all of the new sniffable things brought inside as a part of her recovery and parked himself next to bedside quite gently. 

Burgers and shakes coordinated for delivery
by Lisa and Outlook Nebraska

Perhaps most deserving of praise is Liv, who has the heartiest of hearts and an empathy-filled soul.  She felt very strongly about passing on her weekend activities in order to be an integral part of her sister’s care in every possible way-- from helping with transfers to shampooing hair to card playing to whatever the moment called for.  She earnestly told me a couple of months back when we were preparing for this surgery that if Camille ever had to have anything done like this as an adult, she would temporarily move Camille into her house, work from home and take care of her until she recovered.  Without being asked, she has done the pre-teen version of this over the past weekend.  Perhaps the most beautiful part of this gesture is that I believe she wants to give to Camille so much because she realizes all that Camille has given to her. 

So what does the near future hold?  Healing without bearing any weight for the next 5 weeks.  Returning to Minneapolis to be de-casted the week before Christmas.  Then, the real work begins of getting up, learning new moves, and building up the strength to be mobile again.  Then, more work to be mobile even better than before.  That is our hope, with no guarantees, as is the case in life.   

Thank you, friends, family and framily.  All our love. 

Post Op Day 2

Shorter, less well thought-out update tonight as we are just...pooped. 

The last 24 hours were a bit of a doozy.  Pain got a little out of whack last night, we lost both of her peripheral IV sites which were our ticket to a morphine bolus to calm the storm, she got emotionally looped out on valium , and we finally got an IV line back in about 2 a.m.  So grateful for her night nurse, Ash, who loved on her through it all. 

As I mentioned yesterday, the girl likes a plan, and well, so does her mamma.  We had trouble pinning down a plan today, which rattled me more than I like to think it would have. Attempts at getting her bluejay blue casts on today were a bit thwarted.  Her left foot incision was draining too much for progress in that department, and though her right leg got casted, it had to be slit later on in the day due to swelling---I mean vibrant colors are great, but purple feet generally don’t bode well in the long run, so the team thought it best to try to prevent that from happening.  She did not end up getting her epidural pulled since we will have another running jump at casting again tomorrow.  This means she still has a catheter and hasn’t yet made it out of bed. 

Confessions of a mama striving to be authentic and okay with vulnerability:  I miss our nursing family and the set-up at Shriner’s so much, and I’m having a hard time getting past the fact that we aren’t there where we were for her rhizotomy.  Transition is hard, and we are in the middle of the muddle where Shriner’s is still trying to transition the care of all of their operative patients over to Gillette and move their services to an outpatient setting.  This has led to a bit of confusion among members of the cast.  Still, we have had some great people to work with here.  The bright spot was certainly our new friend, Laster, who is the resident Master Caster.  He was just the feel-goodest guy, at his trade for 24 years, so svelt with a carpet knife thingy and a cast saw that nobody even flinched when he revved it up and came within ½ inch of Camille’s leg.  And indeed, his name is Laster.  It turns out he was the last of 16 children, and his mother named him Laster as she fully intended him to be…the last.  I can’t say I wouldn’t have done the same.  Plus the name just reeks of character and fits him like a glove.   

We are so grateful and humbled and wow-ed by all of the messages of support and all of the special shout-outs from all of her/our people.  We’ve had a hard time keeping up with messages, but please know that our hearts weep a little with gratitude for each well-wish and caring vibe.

Tomorrow is a new day.  The perhaps lofty goals are to get casted, get that epidural out, get the catheter out and get out of bed to start working on transfers.   Maybe even get out of this room.  That’s a lot of outs.  A shampoo would be a big bonus.  Good thing she fell asleep early watching basketball; it may be a busy day. 

We Are

We are safe.  We are warm.  We are here.  We are hugging Camille today in St. Paul, and we have my parents to hug on Jack and Liv (and Vinny) back in Omaha. 

We have so much to be grateful for, and that is not lost on us.  Families in our periphery in our little corner of the community in Omaha have absorbed an unimaginable amount of grief in the past several weeks.  Friends and family alike are fighting huge battles…some winning in this world, some not so much.  If life has taught us anything, it is to embrace what is important and try harder to let go of what is not.  I am such a remedial student much of the time.  Tonight, though, I am grateful to be at bedside with my girl who lasted precisely two minutes after tuning in to Harry Potter and the Deathly Hallows…Part 1 of course…as I was reminded it would be completely silly to watch Part 2 without recently having watched Part 1.  As I mentioned, I am a remedial student much of the time. 

CPM machine: Dad said it looks just like
 "back in the day."

Post-op Day 1 brought a smattering of this and that, really having passed in a flash.  Camille had a great last night, with pain well-controlled by an epidural expertly placed by a smashingly savvy anesthesiologist, who took on the challenge of inserting it in the setting of post-rhizotomy scarring with such expert grace.  Attempting to wean down the amount of meds going into it proved a bit futile.  After tapping out with Bill in good confidence this morning in the “changing of the guards” so I could get a little sleep, I came back to realize that I missed quite the rollercoaster of pain.  The benefits of having a rock-star dad is that he covers the slack and makes it all better to the point that when mom comes back, it seems to her as though none of it ever happened. 

With pain put back in its place, Camille’s room was a-flurry with visits from Rec Therapy, the vendor for the Continuous Passive Motion (CPM) machine, and Physical Therapy to start up the CPM and lay out the plans for the next few days.  Because, of course, Camille loves a good plan.  We managed to have just the most wonderful conversations with the pediatric intensivist who spent time at UNMC and in Western Nebraska in his days of youth—a truly amazing soul who has spent his life working his passion and can’t quite step away.  Smattered in between recovery tasks were plenty of card games with the card shark herself, the last one played in a valium-laden stupor which left Bill and I laughing ourselves to tears and Camille less amused.  To say that she nearly beat us in rummy with said valium on board, slurred speech and all, probably does not really reflect very highly upon us. Someday she will laugh at all of these stories.  She might still not laugh at the memory of me telling her not go anywhere each time I left the room today as she lay immobilized.  Too soon?

Short $.04 of Avocado

And for our daily dose of REALLY good humor, I am indebted to Bill.  I truly wish I had it in me to

engage in and brighten up the random moments as much as he does.  At right is a picture of my "#1 with avocado, no mayo" Jimmy John's sandwich, which he dutifully brought in for my supper, labeled not with the customary #1 +AVO -M, but instead with "+.75 AVO."  What the heck?  Welllllll....when Bill ordered my sandwich, the unsuspecting employee reminded Bill that adding avocado reflexively adds $.79 to the cost of the sandwich, to which Bill NATURALLY replied, "Oh, no!  My wife only allowed me an extra $.75."  So, the Jimmy John's guy proceeded to call the bluff and add just $.75 worth of avocado instead of $.79 worth.  Brilliantly played. 

I am so very, very grateful for these memories that we will have, atypical though they may be.  Hug your people.  Love them fiercely.