Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Saturday, May 3, 2014

Our Trip to New Jersey for M's SPML Surgery

After a LOT of research, we decided to take M to New Jersey to have SPML (selective percutaneous myofascial lengthening) Surgery with Dr. Nuzzo.  I was able to send video of her walking and her PT doing ROM (range of motion) stretches with her for evaluation.  She was a great candidate so we set the date for April 29th and on April 26th, we flew to NJ!

The security (TSA) at Dulles was so annoying.  They made me take her SMO's off, take her out of her pushchair (its like a wheelchair), fold it all up and send it through the scanner, carry her through the scanner and then they swabbed me for drugs!?  WTH Dulles!

Then after walking for 30 minutes to our gate, I was told they'd oversold the plane and we couldn't get on.  M and I sat there and cried and cried and cried.  How!?  Fortunately the ticket guy must have felt sorry for us because after I refused a flight to another airport (I mean for real!?) he printed off tickets for us.  They weren't together, but the guy next to me agreed to switch and after a delay for vomit clean up from the passengers before us, we finally took off.  

My friend Lora lives in NJ.  I've known her only through the internet since she also adopted a little girl from Ukraine who has cerebral palsy like M.  We thought it would be awesome to finally meet in person and let the girls have a day to play together before M's surgery.  They picked us up at the airport on Saturday evening and we spent all day Sunday hanging out.  We arrived a few hours later than we had planned due to the turbulence and the vomit clean up, but hey we made it!  Lora and I sat up drinking wine and chatting until well past midnight.  It was great meeting someone I had an instant connection with.  It just doesn't happen often anymore because no one gets my crazy life full of bio kids and adopted kids and special needs kids.  She also has a lot of kids (5) and a mix of bios and adopted.  I sort of want her to come live next to me because we had a GREAT time together.  

M and Vi at the park.
They both LOVE swings which turned out to be only one of about a million things they have in common.

Blowing bubbles.

Waiting to see Dr. Nuzzo on Monday!

Waiting for the surgical team on Tuesday!

Practicing blowing up balloons for all the babies for the anesthesiologist.

One thing I LOVE LOVE LOVED about Overlook Hospital was that they let parents go back with the child until they are asleep.  It made a world of difference for M because she was hysterical at UVA when she woke up without me after being taken away.

Groggy after surgery, but mom found Princess Peppa Pig in the hospital pharmacy and she likes bubble gum scented masks too.

Back at our hotel a few hours after surgery.  She had zero complications.

The main reason we chose SPML over traditional lengthening.  This is the surgical site on her leg immediately after.  You won't be able to even see this in a few weeks.  No incisions! 

Doped up on Valium and some other good drugs the next morning because those legs are sore :-/

At the airport ready to fly home on Wednesday after her post-op appointment!  Just one day post op and we are outa here with zero restrictions other than keeping the casts dry.

On the plane ready to take off!

Due to the massive amounts of rain our state received, this was our road closed due to high water.
Our typically 2 hour drive from the airport took about 6.

The next day I took M for a new summer haircut!

yesterday she was jumping on the trampoline with only a dose of Ibuprofen.  

I'll do a follow up post to this one with before and after pictures and videos.  M has to wear her casts for 4 weeks and then she'll get a new pair of AFOs.  Right now she is really weak because the surgery removed the tightness she'd been used to and its like she has brand new (jelly) legs.  She is doing great though and really wants to go back to school next week!

Overall, the trip itself was a lot of work.  I was with M by myself so I had to navigate luggage and a kid in a push chair all over airports, hospitals, hotel, and Jersey.  The Grand Summit Hotel in Summit, NJ is where we stayed and thankfully they have a shuttle that has a wheelchair lift because M could NOT stand up and get into a vehicle the day after her surgery.

We ordered room service for dinner and lunch after she had surgery and while expensive, it was doable for the short time we were there.  I had a little mini-breakdown only once and it really had nothing to do with M's surgery and everything to do with school continuing to send emails demanding I meet with them on dates I could not due.to.M's.surgery!  I mean hello!  I ended up ordering a glass of wine and paying $20 for them to deliver it.  I slept exactly 2 hours that night because I was so.very.angry. and stressed.

My husband stayed home by himself with the 5 boys and put them on the bus and got them off each day.  He held down the fort and did a great job.  Its not easy to do by yourself when you are used to it, and he's not used to dinner, laundry, and school prep.  Our thoughtful neighbor delivered 2 dozen donuts one day to help make up for mommy being gone.  There were none left, so I think it helped!

Overall, we only spent Sat-Wed away and one of those days was extra because we were visiting my friend!  Dr. Nuzzo's staff was AWESOME SAUCE and Overlook Hospital is the bomb.com.  I've dealt with a lot of doctors and hospital staff.  These guys are the best.  I have nothing bad to say about them.   They were so helpful and accommodating to whatever we needed.  Dr. Nuzzo himself is kind of an eccentric guy.  However, after dealing with doctors that only view M as a number and a diagnosis, I was in love with Dr. Nuzzo.  He knew what he was talking about and he was confident in what he was doing.  He was also really, really "unprofessional" in a good way.  He smacked himself in the head with a toy hammer before even saying hello.  M thought it was hysterical so for her, it was great.  Doctors tend to freak her out by yakking about how she's from Ukraine and then talking about her and not TO HER, and then this guy just walked into the room and smacked himself in the head with a hammer.  Then he talked TO HER.

Dr. Nuzzo did alcohol blocks in M's adductors.  SPML surgery to both hamstrings and calves and an alcohol block in her right arm.  She's in rubbery casts (yes so cool!) for 3-4 weeks!
We'd totally do it again!


daniellem02 said...

Sounds like it was a roaring success! It drives me nuts that they oversell plane tickets, though. I just don't understand why they always do it. If I wasn't allowed to get on a plane with a paid ticket, I would NEVER fly that airline again, and no amount of free credits would change my mind!

Lisa Zubar said...

I have spent the last 4-5 days reading all of your blog. You are certainly a blessed, hardworking, advocate for your family! Your munchkins are marvelous! I have three bio daughters and we have done foster care but I know nothing of your journey and I think you are an amazing trailblazer. The only thing I thought for your sons is Rosetta Stone in English because kids love computers, headphones, and microphones. I have not used it so you probably would know more. Enjoy your blessings!

Andy Leonard said...

How are the results almost 3 years later? Considering it for our son.

Mom to Mine said...

Andy, the results have been fantastic. She has continued to gain strength and new skills. The one thing that did wear off was the alcohol blocks, which we knew going in. We continue to follow up with Dr. Nuzzo by email once in a while and he answers our questions. The only regret I have about this surgery is that we did not do it sooner! M just started on baclofen two weeks ago to address her overall tone which kicks in as she tries to do gymnastics and ballet, but the fact that she is DOING these things is amazing. The Baclofen has had amazing results already in addressing the overall tone in her entire body, but her feet and legs still have a great range of motion.

We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson