I wanted to update you on how Kelsey’s recovery from surgery is going, about 10 days in.

Backing up, Kelsey had “femoral proximal osteotomy, hip acetabuloplasty and adductor release” on both of her legs on 1/22/18.  Say that three times fast. That means six incisions.  Three on each leg.  We were surprised to learn that Kelsey did not get a cast that we expected, but a adductor pillow.  It prevents ALL movement of the lower body.

So picture it…you’re four.  It’s winter.  You can’t play with toys on the floor, take a bath or get in and out of your brand-new “big girl” bed. You can’t walk, roll on your side or even sit up. Kelsey is supposed to lay at a 40 degree angle or less for three weeks after the surgery. We’re 10 days in and we’re all already done!  I guess after three weeks, the work the surgeon did will be set, and she can resume normal sitting.

I had worried about the surgery.  Worried about all of us staying healthy for the surgery to go smoothly.  Worried about sleeping in the hospital for 5 days.  Worried about Kelsey’s reaction to the pillow (or what I thought would be a cast) and the hospital stay.  I had worried about the pain she’d experience.  Worried about Ben’s adjustment to a new house, a new sister (for a period of time) and absent parents for a week.  But I didn’t worry about the fact that Kelsey would have to exist in a laying position for this long.  I didn’t even think about it.  I knew she’d have a wheelchair and I don’t think I’m alone in thinking that when one is in a wheelchair they are sitting.  Not laying.  It’s definitely tough position to be in (pun intended) for our little girl.

Dear friends and family have provided us with every possible lap game, sticker book, play-dough and paint-by-number book we could ever yearn for to keep Kelsey busy in this restricted position.  They’ve all been a life-saver to me, especially, as ways to entertain her when her favorite things to play with get old.

But the immobilization is taking it’s toll on Kelsey. Today, she tossed her beloved Elmo Alphabet Letters up in the air, Theresa Giudice style.

And it was only 10 AM.  She is bored and irritated with her predicament and she’s letting us know.

We can remove the pillow for two reasons: Transportation and bathing.  We are able to make the carseat work without taking the pillow off, thanks to the Shaggin’ Wagon.  But we haven’t tried a bath yet (man does she need it!), because her sutures have to heal and she has to be able to sit up at least a little for a bath.  If you have thoughts or tips on how to make the bath work when it’s time, do let me know.

Pain management is…going.  While I think boredom and discomfort on her back would be her main complaint, there is still pain.  Especially when we accidentally get behind with one dose. We are still sticking to the every-four-hours schedule with two pain killers, but plan on discussing the weaning process with her doctor tomorrow.

To fight the boredom, we are going to attempt to get out everyday from here-on-out.  She can wear her “pillow” in the car and has always enjoyed getting out and going for rides.  A trip to the drive thrus at the bank and Chic-fila earlier in the week were probably the highlight for her.  Our new hill (like our old) isn’t really conducive to walks outside with the wheelchair (which in it’s recline position is already hard to push for anyone over 5 feet tall), but I’m sure that it would really lift her spirits if we could rig up her stroller to support her legs.

Despite the hill, our new house is AWESOME!  The ease in maneuvering from room-to-room-to-room is amazing.  Kelsey calls her wheelchair her “bike” which is super-sweet and it’s caught on for the rest of us.  She hangs in her bike, the couch, her new daybed, and the bed we have set up in the playroom/guest space.  That’s the best place to play with her while she also has access to a TV, space for toys and her beloved mirror.

For us, it’s so nice that all those spaces she needs to be are so close to the kitchen, our bedroom and all the rest.  The house is SUCH a blessing, especially at this difficult time.  Imagine moving into a one-floor house with a ramp a week before a family member is bound to a wheelchair.  Thanks, God!  The house is also providing a great distraction for us with plenty to unpack, put-together and shop for!

And here’s the big news, after 13 years of being without high-speed internet, we’re back baby! All those Netflix shows and movies On-Demand y’all have enjoyed for what seems like forever are finally ours!!!  Due to the rural nature of our houses, high-speed internet is almost impossible to get (yes we’ve tried and tried and tried), but we’ve been able to hook something up in this house (thanks to Dave’s bestie Dan) and we’ve never been happier.  Need to update your phone!? Do it!  Download TV, apps and movies to your device?  YES!  It’s so, so nice.  A Brave New World for us.

I’ve binged on The Marvelous Mrs. Maisel (can’t recommend enough…I was so sad when it was over!), The Crown (Dave likes this one too) and The Unbreakable Kimmy Schmidt.  Ben’s definitely been purging on Poke’mon and Kelsey enjoys the on-demand Mickey and Elmo (she will.not.drop.Elmo).  But thank goodness for those characters and for cellphones, iPads and You Tube.  I cannot imagine surviving this period without technology.  I hate seeing Kelsey getting so much screen time, but it’s a LONG day when you can’t sit up and the devices have been so helpful and comforting to her.  And it’s virtually the only independence she has at this point.  It’s the only thing she can decide to do and access by choice and without help.  Screen time limits were not created for four year old hip acetabuloplasty patients.

The plan.  The plan is to wean the meds, get out for a bit each day, and hopefully set a goal of a couple weeks of school as soon as Kelsey can sit at 90 degrees (10 days from now).  Then, around March 12, we will head back to Hopkins for an X-ray and post-op visit with our surgeon.  I’m under the assumption that we will check into Kennedy Krieger on the same day.  And then we’re predicted to be there for 3-4 weeks.  Come on 3 weeks!!!

We visited KKI and were very impressed with the daily schedule, nurses, therapists and activities Kelsey will have at her disposal 24/7 to recover better than ever.  We still aren’t sure what family life will look like with her staying at the rehab hospital for 3-4 weeks.  During the tour, we found out that the rooms are semi-private, which means she will have a roommate during this time.  And if that roommate has parents, it could be quite crowded in that small room.  I was really disappointed to hear about this as the rehab portion seems the most daunting (rigorous and long!) but I’m trying not to stress too much.

As mentioned above, I worried and worried and worried, and what actually has been the hardest to deal with wasn’t even in my wheelhouse of thoughts.  I think Kelsey will enjoy the stimulation, the busy days (therapy six hours a day, six days a week), the learning and the attention, and hopefully that will all outweigh the discomfort I feel with sharing a room with strangers.  And if it feels right, we may leave Kelsey to sleep by herself and sleep at a nearby hotel or with friends in the city.  Or possibly even drive home each night depending on how it all shakes out.  It seems criminal to leave your 4 year old “by themselves” at a hospital overnight, but I am trying to think about the fact that we have had no problem flying to Napa, Nashville and Punta Cana (June!) without her and Ben.  In this case she will have round the clock care and monitoring from medical professionals.  Still, it won’t be easy. Hospitals are different than home when you’re sleeping without your family.

So that’s where we are right now.  Thank you for checking in and I’m sorry if I didn’t respond.  Thank you for all the messages, texts, emails, flowers, presents, meals, Edible Arrangements, house warming gifts, unpacking help, gift cards, furniture building help and errand-running. We most definitely would not be where we are without all the help you all have given us during this time of total disruption of our “normal.”

Love,

Kim

P. S.  Our old house still hasn’t sold.  There’s Open House on Sunday.  Go check it out!