Officially scheduling fixator removal

The past 2 weeks have been very good. There was only one time just two nights ago that Mary randomly said her leg was sore when she got into bed and she asked for Tylenol which is odd because she doesn't request medicine.

Today we had our follow up with Dr. Scott.

• They removed the cast and put on a new one as he mentioned he would at this visit. The new cast is trying to straighten her foot more. This time you can see her toes which is nice but they might get cold.
• She enjoyed the 10 minutes her leg was free and we took the opportunity to clean her leg.
• I am still surprised at how quickly your body atrophy's.



The guy was very nice and tried hard to work around the signatures






unveiling after 1st cast






Old pin sites scabbed under cast- site of last infection






examining foot- looking to see how straight he can cast it at this visit






Daddy cleaning before getting 2nd cast on


 



Notice the atrophy of her lower leg in just 2 weeks



X-ray shows the bone is still consolidating well so we are scheduling the complete removal of the fixator. It's perfect timing because Mary is getting tired of skirts, not getting to participate in things like PE, and of simply not being able to move freely. She is over her walker so we will brave crutches at school starting Thursday.

new growth from one view

new growth from a 2nd view

Close up of old pin sites- larger area slower to heal is where the last infection was

photo op: difference is from not being able to fully extend her knee yet (and the shoe of course)

new cast

swollen around new pin sites

• So we are waiting for two things. A new infection to pop up since Dr. Scott said the swelling around the 2 new pins shows "something is brewing" meaning an infection. (Remember I said her leg was sore...) We are holding off on the antibiotic until more symptoms like drainage appears.
• The second thing we are waiting for is the date of the fixator removal. It should be the week of Nov. 12 which will be 3 weeks from the calculated estimate based on the length gained. (66 days of lengthening = 132 days of consolidation)
• When he takes the fixator off he will put her in a higher cast to continue to work on straightening her foot. You don't want to cast to the new bone area because it puts stress on it and we don't want to cast over the knee because you lose range of motion. So the cast will go right below her knee but as high up as possible.
• Her knee has been anywhere from a -8 to a -11 in PT (goal is 0 degrees). We need to do more PT at home like we used to now that she has a cast on and can't do PT by just practicing walking like she had been.

Teenagers

Believe it or not, there have been many positive things that have come from our fixator experience but one that I have been deeply touched by are the young adults we have met through this experience or are related to and how wonderful they have been to Mary.

• There is the teenager at the dance studio that volunteered on the spot to help Mary so she could participate in the dance recital. 

• There is the 17 year old high school senior in the neighborhood (now in college) that had a fixator a year ago due to a very bad football injury that came to visit Mary twice this summer and sent her a handwritten postcard when he was in Europe.

• There are the second cousins in Maryland that have handwritten a multitude of letters to both Mary and her little sister during the process and continue to do so. 

• There are the local first cousins that would visit and go swimming with Mary and her sister this summer when they could have been out with their friends.
• And one amazing pen pal (handwritten letters!) in Canada who had a fixator for FH herself 2 times when she was younger. She has been been a wonderful source of knowledge, support, and friendship. She is already a wonderful Child Life Specialist! I can't thank her enough for how much she has helped us!!!

I like easy to read, happy books now a days and picked up Chicken Soup for the Teenage Soul III at a Library book sale earlier this year. 

In it was the following poem by Jamie Haskins:

Teenagers Are Amazing

Teenagers Are Amazing,

I wish the world would see,

just how beautiful we are,

how compassionate we can be.

I wish they could take back, 

all the cynical things they've said,

and see how much we shine,

be positive instead.

Remark on our radiant smiles,

and the differences we make,

all of the people our lives touch,

all of the chances that we take.

Notice how we change,

each and every day,

wanting to leave childhood,

yet desperately wanting to stay.

I wish they could remember,

how tough our lives can be,

the promises that are broken,

the violence we see.

Yet still we venture onward,

unsure of where the road may lead,

hoping they will take notice,

hoping they'll take heed,

of the changes that we've made, 

of the power that we hold,

of the wisdom we have hidden, 

of the stories yet untold.

I hope the world will notice,

what some have already seen,

teenagers are amazing,

striving to follow their dreams.

Recovery from 5th procedure

Mary's recovery from Tuesday's procedure was one day!!! Getting two new pins in her leg didn't hurt too bad (just as Dr. Scott and Miranda said) and the cast on her foot hasn't caused the discomfort I was expecting. I assume Dr. Scott is slowly moving the foot in a straighter position. He told her he would give her a new cast 2 weeks after the procedure so I assume he will slowly make corrections with serial casting.

With the new look we have been able to keep range of motion in her knee but Mary needs to learn to put weight on her foot. She is back to using her walker instead of crutches. She did put weight on her foot for the first time last night.

We removed the gauze last night and will start the pin cleaning today or tomorrow. I am assuming that will be painful since the pins are in a new area.

All is well...

New look without the gauze

Disappearing Fixator

We expected 3 procedures total during the lengthening: one to put it on, a 2nd to remove the thigh ring and foot plate, and a final one to remove the fixator completely. Instead we are at 5 procedures and counting. Every case is different but our challenge has been loose hardware, hardware irritating the bone and an infection with antibiotic challenges...the process is fluid but so far a success as far as lengthening and consolidating.

I thought it would be interesting to put together pictures from each procedure. The fixator is slowly disappearing...

#1: Fixator put on May 10

#2: Additional strut put across her knee to help straighten her leg - June 19

#3: Much awaited procedure, removal of thigh ring and foot plate since lengthening is done August 2

2nd picture showing the foot plate is gone. The thigh ring and double foot plate weighed 3 pounds.

#4: Removed blue wires because they were irritating the bone - August 30

2nd picture without gauze

#5: Replaced bottom 2 pins because the area was infected and antibiotics weren't working well enough, put a cast on her foot to help straighten it out- October 16
The ring and 6 struts weighed 1.5 pounds.

Hopefully, there is only one more to remove the fixator completely. We are anticipating it to be in November earlier than the expected early December date since her bone is consolidating so well.

5th Medical Procedure

Infection the night before the procedure- not looking bad but it did draw the aware pre-op Nurse's attention

Traditional photo- walking in using crutches this time...

The past two procedures were very easy but I was very nervous about today's since we weren't 100% sure we knew what Dr. Scott would be doing. To add to my stress, the written surgery description was to remove the fixator and replace it with with a full leg cast. However, when we saw Dr. Scott he said he would be replacing the two pins where the infection was, shorten the fixator, and put a cast on her foot. WHEW! Exactly what I was hoping for!

Mary had the same anesthesiologist as when she had the fixator put on in May.

Same team as when Mary had the fixator put on

Dr. Scott is always very good with his estimates for surgery time. The procedure took 1 and 1/2 hours. When we arrived in the Recovery Room Mary didn't look good and she had told the nurse she was feeling pain. We have learned through all of Mary's procedures she luckily has a very high pain tolerance so when she was asking for medicine I was nervous!

Feeling better

Initially

Mary was given a total of two doses of morphine and we gave her the Tylenol with Codeine that we brought with us for the ride home. Recovery took 2 hours since she had one experience of not feeling so good so she had to lay flat again for a little bit.

removed hardware

new look (they didn't have a new pink ring but hopefully the pink cast makes up for the loss of a pink ring :-) )

They gave Mary a dose of intravenous antibiotic and we are to finish the Keflex prescription (2 more days).

Mary was fine at home until 9pm when she was getting ready for bed and standing really bothered her. So she will not be going to school tomorrow. She feels fine when her leg is elevated.

Dr. Scott said her bone is looking really good. I was able to communicate to Dr. Scott that we are not in a rush to get the fixator completely removed until we know the bone is fine. We don't want the bone to collapse from taking it off too early when now that the cause of the infection is gone there is no need.

We see Dr. Scott in two weeks and he indicated he will take the cast off and put a new one on at that time.

5th medical procedure scheduled

We are scheduled for Mary's 5th medical procedure on Tuesday, Oct. 16. We are expecting the infected bottom 2 pins to be replaced which will shorten the fixator and a short cast to be put on Mary's foot to help align her foot. I am not sure how long either will be on, maybe only a couple of weeks.

Good news:

• Keflex seems to be working on the infection like last time.
• Mary got to -4 on her knee yesterday at PT. She seems to be back on schedule of getting 2 degrees better at every visit. The ankle has plateaued at 0 though (goal is +15).
• Mary is using her crutches as much as possible now vs. her walker. She walks better with the crutches than her walker. Walking is the best PT: it  consolidates the bone and gets her knee and ankle moving. We haven't braved school yet with the crutches though. 

4 day reprieve is over

Mary took the last dose of her 10 day RX of Keflex on Friday morning and the infection returned today (Monday). We know because it is sensitive and red again. We are back on Keflux as of tonight and we will replace the two pins (and maybe put her foot in a cast) the week of Oct 15 when Dr. Scott is back in town. We are waiting for the scheduled day, time and location. It will be Thursday Oct. 18 or Tuesday, Oct 16 in the afternoon...

Holding Pattern!!!

Mary's infection seems to be clearing up with Keflex so we saw Dr. Scott today to see if we need to do anything on Thursday, and if we do, that Mary is now leaning toward getting 2 new pins vs. a full leg cast and confirm he is ok with that decision.

Below is a picture of the infection from this morning. It is less red, but the big difference in the status of the infection is the sensitivity is completely gone.

Dr. Scott was surprised that the bone near the infection looked good and has bought us some time!!! Dr. Scott wants us to finish the full 10 days of Keflex (2 more days) and sit tight. If the infection returns (he believes it will) we will jump back on the Keflex.

x-ray of infected pins 10/2/12

We are very happy to have bought some time as is but we still need some positive thoughts that if the infection returns the Keflex and or Clindamycin will hold it off until Dr. Scott returns (he is gone next week.)

Dr. Scott started focusing on Mary's foot and wants us to start doing the stretches below to help straighten her foot and help it gain more flexibility.

If the infection returns, and we need to get rid of the pins, after a future course of Keflex when he puts the 2 new pins in and shortens her fixator he might put her in a short foot cast which will help get her foot in better alignment. Sounds like the best of both worlds. By keeping the fixator on we get to keep the range of motion in her knee that she has worked so hard on but use a cast to help her foot.

The good news about this infection vs. the first two is that Mary hasn't regressed with her PT. She has held constant (knee at -10 and ankle at 0) even though we have backed off the AFO (foot brace), knee brace, and at home PT because they were irritating the infection.

One thing I am continually grateful for is that the lengthening and consolidating (the whole purpose of the fixator) has gone so well. Yes, we have had other "issues" but what we are trying to achieve has really gone smoothly. Dr. Scott still thinks she might be done consolidating a month early (early Nov. vs. early Dec).




10/2/12 new growth one side view



10/2/12 new growth other side view