The Night Before and Day of

Tuesday night ended with a rough baseball all star game for Jeffrey. We wanted him to be able to play baseball as long as he could this summer. It was great to have a large cheering section for Jeffrey. His aunts and cousins were rooting on the East Greenwich Majors. Jeffrey started the game on the mound and threw some sweet pitches. The game ended around 8ish with a loss. The boys were bummed, but Jeffrey shed tears for a completely different reason.
   After the game, Jeffrey's head hung low with quiet wetness dripping down his cheeks. I asked my ball player if he was sad because of the loss or because of surgery. He said, "Surgery. I don't want it to hurt." His Aunt Kimmy started tearing up, so in typical emotional mom fashion, my eyes welled up and I hugged my big brave boy tightly.
   With well wishes from parents and teammates, we headed home, dropping Jack off to Grandmom on the way. We grabbed some last minute travel items while Jeffrey showered, then we headed to Baltimore. 
   Since we had to be at the hospital to register by 6:30 am we slept at the Hackerman Patz House.
  



Fast Forward through sleep til 5:45 am. 
No food or drink. 

6:25 am: registered at Sinai

6:50 am: headed up to Rubin Institute of Advanced Orthopedics (RIAO) to get pre-surgery xrays
(only the whole room was empty because it was super early and no one was there yet)

7:30 am: xrays

7:45 am: measured by Jeremy for his hip orthosis brace

8:20 am: pre-op

SURGERY WAITING TIME (was a blurr)
2:30 pm: recovery

Saw Dr. Standard and Ms. Marilyn in recovery

4:00 pm: brought to a hospital room 3103
4:40 pm: ate one very filling Saltine (not using his hands though because they are still numb and heavy from the i.v.)

6:15 pm: felt feverish/sweaty and looked pale
This got us super nervous because we thought maybe his blood count was low and he would need transfusion. Turned out all was fine. 

6:45 pm: feeling better and attempting to eat pancakes and scrambled eggs (thanks, dad, for feeding the patient)

That night was a long night with broken sleep due to vitals being checked every four hours and blood being taken at 4:30 am. That was fun. Poor Jeffrey. At least this is all temporary! 
I'll leave you with one little remark from this guy, "She wasn't very gentle." He was referring to the nurse taking his blood samples. Too much, this kid!

Pre-Surgery Bucket List

We are less than a week out from our June 29th surgery date. We have been able to check off a few things from Jeffrey's bucket list.
Beach/Ocean (check)

Jamie and our boys 6/22/16 First Beach trip of the summer

Matthew, Jeffrey, Jack (and his metal detector)

Freezing cold Atlantic Ocean

Rides on the boardwalk (check)

Runaway Train at Castaway Cove

Swings at Castaway Cove

Miniature Golf (check and bowled in the same day)

Mini Golf at Gino's

Bowling: Jack, Jeffrey, Max, and Lainy

Play baseball (check and will continue until the night before surgery)

East Greenwich Little League Minors Champions: Angels

SJ Titans: Jeffrey's TSE travel team

See the "Norm of the North" movie (check, thanks, grandmom)
Dippy's ice cream (I've lost count of how many checks this would get)
Go Swimming (check)
Have catches with dad (check)
Play Basketball (check)
Hit off the tee into the baseball net


Of course we still had to do the necessary before the date too.
Get blood taken (1st time and he was so brave!)

That's all for tonight since I'm falling asleep already on the couch. This bucket list is tiring me out. Who am I kidding?! It's summer time, I LOVE naps!! yes, for myself!

Checking in and Getting Ready

Hello! Long time, no post!
It's hard to believe that it's been 6 years since Jeffrey's lengthening with the external fixator surgery! 6 years! He was such baby then. Since that time, they've developed a super cool, internal lengthening device, which we'll take advantage when Jeffrey is a teenager.
For now, we plan to have Jeffrey's next surgery on June 29th. We found out in the fall that Jeffrey's hip needs a deeper pocket. The femur head is not resting in a curved pocket on his affected leg. Dr. Standard plans to perform a triple pelvic osteotomy, (hip cut in 3 places and tilted to form a deeper socket). The is the result of his lengthening surgery. Typically, children with this type of limb discrepancy have a surgery to strengthen the hips before lengthening.When he was a baby, his hips were no concern needing surgery before lengthening.
We had an appointment Monday, May 16 at 1:15. We were in and out so quickly! It was impressive. Here is the great doctor's drawing of the surgery in kid terms:

Dr. Standard illustrating what's gonna take place and why

Dr. Standard drew the Femur head and how the hip will be cut and shifted. Then Jeffrey added "butt cheeks"

 We now have a better understanding of what this next surgery will entail. We have to schedule a pre-op physical with the pediatrician and look into directly donating blood. The blood would be used if Jeffrey should need a transfusion. Hip surgery could lead to a lot of blood loss for a child which can be unsafe.  

 Here is Jeffrey's most recent X-ray. His right leg is 5 cm shorter than his left. You can check out his hip and how the "hat" is on the side, not on top like it should be.
For the next month we'll be prepping physically and mentally for the Summer ahead. We'll be at Sinai for 3-4 days following his 4 hour surgery, then possibly a week at Hackerman-Patz. Jeffrey will be non-weight baring for 2-4 weeks, then light weight baring and home stretching. By 8 weeks, he should be ready to get back into sports. This is good news for Fall sports.
We are so blessed to have found Dr. Standard and RIAO!

 

Waiting

Dr. Standard smiley face thumb

Read in Pre-Op

Proudly wearing his Devon Still jersey

Well, after waking up at 5:45 at Hackerman Patz, heading to the hospital by 6:30, and waiting in the waiting room until 8:40, we finally headed to pre-op. We saw all the necessary people, waited some more watching better TV. I say "better" because in waiting rooms all we had to watch was the awful story of the abduction of the Philadelphia girl and Good Morning America. My poor 8 year old boy!

So, now it's February 2nd, Happy Groundhog Day! Um...Jeffrey's doing great! I had typed a lot more a few months ago but my computer crapped out on me and I gave up! I'm updating now.
Jeffrey took about 2 weeks before he could walk unassisted after his rod was taken out, his 8 plate was put in, and the ankle screw was put in place.
The screws in his knee and ankle are to help straighten the growth of them.
We had a 3-month post op clinic appointment with the almighty Dr. Standard this morning. All went swimmingly. um...mostly. There was a surprise when discussing future surgery plans. We knew there'd be lengthening, but...the new one...pelvic triple osteotomy to deepen the pocket of the hip for the femur. After coming home and talking with the hubby, we both think the summer of 2016 will be best. 3-4 days in hospital stay, 2 weeks at Hackerman Patz, and a 3-month recovery. Yikes! Surprise. We know that Dr. Standard knows best and we trust him whole-heartedly. The man says surgery, we say okay!

 Waiting Room

 Selfie

 RIAO photoshoot for his file

8 plate and ankle screw x-ray

It's That Time Again...

It's hard to believe that it's been 4 years since Jeffrey's femoral lengthening when he was 3 1/2.
He just had his 8th birthday on October 22nd.
This latest surgery will take place Friday, November 7th. He was originally scheduled for his femoral rod removal and eight plate insertion on August 1st. However, the Monday of that week, our big boy had a fever and the anesthesiologist cancelled it. It is rescheduled for 3 days from now.
I'm not really sure what to expect as far as recovery time and pain.

As far as an update, Jeffrey has been playing summer street hockey, fall travel baseball and soccer, winter basketball, spring baseball (2 teams), and every sport in between at home in the yard. Our non-stop 2nd grader is always on the move.