Manipulation (Wiggle) Procedure

Today was NOT like planned. I had prepped myself for a very "simple" procedure where Dr. Scott was going to check to make sure the hardware was aligned and to do some intense PT while she was under. I thought the major drawbacks were she had to fast and go under general anesthesia for such a short simple procedure.

Got ready, did PT, turned struts to lengthen and left for the hospital

Hospital Entrance (not our normal hospital)

Waiting to be called into the surgery dept.

Changed and getting vitals

Mary just wanted to read while waiting but we eventually played some Uno

Meeting the anesthesiologist

Getting to see the mask that ironically will later make her cry

Getting hat for the OR

We have been calling today's procedure a "wiggle" because the top ring came loose and "wiggled" and Dr. Scott was going to make sure it was properly aligned. But the medical term they used was a "manipulation".

Prior to her going into the OR Dr. Scott mentioned he might be putting a bar across her knee and he warned Mary she would be sore afterwards. I knew that meant she was coming out with a bar on her knee...

Wheeling into OR

Well, it was short. We left her at 1:10 and Dr. Scott found us downstairs in the lobby at 1:50.

• He said she was fine until they went to put the mask on her for the anesthesia. I know it's because she didn't like the room spinning during her last surgery. He mentioned she is so sweet people really try to make her feel better so consoling her was the longest part.
• He said she hasn't been protecting the leg and it isn't her muscles that are tight it is her "bone joint/joint capsule" so he did put the additional strut on to immobilize her knee. He explained that since her situation is congenital that all of the structures are having to change and her joint isn't really enjoying the task.
• We will take a 3 day break from lengthening to give her time to recover.
• She can now stand on her left leg since its straight and locked in place.
• We clarified the focus of PT is now standing on her leg which will help get her body aligned. He also said to work on "tummy time", her glutes and toes.
• He said he looked at the pin sites and they look great.
• He checked all of the hardware.

When we met Mary in recovery they said she came out smiling but that didn't last long. She was bummed to discover the new strut that immobilized her knee.

Checking out the new strut that immobilizes her knee

Full view -taken at home

Close up of new strut that immobilizes her knee

Having a Popsicle

Then the pain started hitting. The recovery nurse starting giving her multiple doses of Fentanyl. At first we couldn't tell if she just had anxiety of the immobilized knee and uncomfortable or in pain. But it clearly moved to pain and the nurse started giving her Morphine. The Recovery Nurse was calling for an even heavier RX when Mary finally said the pain was lowering. Other than when the original pain block wore off and the muscle contractions during her inpatient stay it was the worst pain I had seen her in and I was not expecting that today. It took 2 hours to get the pain under control. She has been taking Tylenol with Codeine for the remainder of the day.

Not feeling good

Reading to try to relax

Finally feeling better

Getting the IV out to go home

Dressed to go home

Snacking while waiting for Daddy with the car

In the car- with a straight leg again just like the first time we left the hospital :-(

We were at the hospital from 11:00 to 5:45 for a procedure that took 20 minutes.

The past 2 weeks have been so "easy" with Mary being so mobile, independent, and sleeping pretty well however today we did a 180. Now that her knee is immobilized she can no longer go to the bathroom by herself, sit in a regular chair, etc., and she won't be able to until he takes the new strut off which probably won't be until she is done with the lengthening process in another month or so.

When my hubby and I debriefed tonight we discussed that Dr. Scott is working on setting our expectations for getting closer to 5 cm. than 7 cm. We are trying to appreciate the 3 weeks we had that her knee was able to bend but its hard once you know what you are missing.

I will add the hospital we used today was beautiful (it just opened the wing we were in 2 months ago) and the care was very professional but we missed Children's. We felt out of place. Not only because we are so familiar with Children's but because our child was the only one we saw there. We are used to everything being so kid centric and today's facility is not.