Super Saturday!

Saturday was the day we thought we were being discharged. Jeffrey was bummed to learn that he would stay in the hospital yet another day.

Cousin Kristen taking time to visit :)

However, I truly believe there is a reason for everything. My cousin, Kristen, came to visit and that made Jeffrey really happy. She brought with her some fun goodies: gum and chocolate, and a super cool baseball from her husband, Tall Paul, who works for the Secret Service.

Also, on that Saturday we were treated to a "make-your-own-sundae" by "Ava's Flavas". It's a nonprofit organization started by a little girl, named Ava, who had cancer and remembers the fun stuff in the hospital. Now, she brings the "fun stuff" like ice cream and crafts to brighten the day of other patients in 2 nearby hospitals. How inspiring is that?!

If you get a chance, like this page on Facebook.
https://www.facebook.com/avasflavas/?fref=ts
You can see where she'll be and where she's been. Show support for such a worthy cause. I love that she scoops the ice cream herself, you go girl!

Torture

Rewind to the day after surgery, epidural still in, iv's are in both hands, catheter in and Jeffrey mentions he needs to pee. Well, I was glad because that means he had some sensation to know he had to urinate. With a catheter it naturally empties one's bladder. He relaxed and let it flow. Well, when he did that the pressure caused the urine to leak out the sides of the tip and wetness was everywhere. All over the chuck underneath him and it pooled between his legs. It even wet his gauze where the incision is.
Cue the torture. Some of the tape had to be pulled back to change the dressing. Once that was done, some blisters were revealed and that freaked Jeffrey out. "Don't peel any more tape!!"

This is the crease between his belly and his right left (groin area)

That was just the beginning of the awful pain. The nurses decided to pull the foley and place a larger one in. I think the anxiety paired with the pain sensation was awful for a 9 year old.  He got a pump of epidural, a dose of Oxycodone, and some Diazepam (aka Valium). 
He was all worked up and upset, but then once he calmed down he started having loopy side effects. One slightly alarming habit formed. He twirled his hair and would pull some pieces out. We would try to redirect his need to do that by keeping his hands busy with appropriate actions, like twirling the tiger's tail.

Let's hope this memory gets repressed for him.
(Note to self, don't let Jeffrey read this blog until he's much older and done his surgeries.)

Oh, Poop!

You got one of these? We will! Never did I think that my 9 year old would need a shower chair or a bedside commode. Well, not while I was still around anyway. Amazon will be delivering one of these bad boys shortly. Jealous? You should be! 

One day, Jeffrey will be helping us on and off one of these babies. Scary thought!

SCREW YOU!

That's what the doctor literally did to Jeffrey. He stuck screws in his right hip. We are giving the femur a deeper pocket and more strength for future lengthening.

We came expecting a four hour surgery called a triple pelvic osteotomy. In pre-op, Dr. Standard presented us with 2 options. The first was the 4 hr triple osteotomy, which is tricky and risky. That's the only option we thought there was. Then he presented a second option with a surgery time of only 1 and a half hours. He even made up a name for the procedure that combined the two types of cuts and the bone graft. (later referred to as the "whatchamacallit") He wouldn't know how he was going to officially approach the situation until he opened him up in the OR.

Dr. Standard initials his knee to be sure the correct leg is worked on

The middle was the original triple osteotomy, the left and right were the other option
(They kind of look like

After Dr. Standard told us the possible options, Jeffrey chimes in with, "I want that one!" (referring to the shorter, less risky surgery with quicker recovery time.) I love that he thought he could just "order" up the surgery he preferred. 

It turns out he fished what he wished for! He had the shorter surgery (the illustration above on the left).
Now, this means he has a quicker recovery time, which is awesome! However, he is not allowed to bear any weight at all on his right leg for at least 2 weeks. Jamie and I will have large muscles from all the lifting we'll have to do. Once Jeffrey's arms are epidural and IV free, he will be able to help lift himself with his arms, but until then, it's all us.
Fortunately or unfortunately, Jeffrey has a brace to keep his hips in place which should be worn pretty much 24/7. He currently has "waffle boots" on to help keep his feet flexed, up straight, and his heels off the bed to prevent sores. 
  The 2 week timeline brings us right up to our family vacation in Ocean City. Hopefully, we'll have a clinic visit the Friday before we leave and maybe be light weight bearing on the boardwalk. Although, board walk bumps are tough to maneuver just walking...or is that just clumsy me?!

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!