Infection, Infection Go Away and Don't Come Back Another Day

We reached out to Dr. Scott today and he has agreed to consider delaying the Oct 4 procedure IF the infection is gone by Tuesday morning. If the infection isn't gone we will have either 2 new pins or a full leg cast (Mary's choice) on Thursday....please send positive thoughts...the infection has been lingering since Sept. 17. It is getting better but I am not sure it will go away in time.

I am dreading the idea of a full leg cast. I would choose a fixator any day assuming we didn't have the risk of having to use an intravenous antibiotic to avoid a bone infection. One way or another we are on a 6 week count down to being done (except for a lot of pending PT).

Infection with Keflex Antibiotic

We think the infection looks better and it is less sensitive to touch. We moved to a new antibiotic, Keflex on Tuesday. We would like it to make the infection go away to give us more time as is vs. going in on Oct 4 and getting either a) 2 new pins or b) removing the fixator and putting on a full leg cast. If Keflex doesn't work we have to do one of the two options on Oct 4 because the next step would be an intravenous antibiotic...

9/24/12: last night on Clindamycin

9/26/12: 2nd night on Keflex (we also stopped applying polysporin)

9/27/12: 3rd night on Keflex

Decision: Take Fixator Off or Get New Pins

Since the clindamycin hasn't cleared up the 3rd infection Dr. Scott gave Mary 2 options:

1. He can take out the two pins where the current infection is and put 2 new pins in above the current 2 pins. The fixator would be a little shorter than it is now.
2. He can completely take off the fixator and put on a full leg cast (top of thigh down to her toes). It would most likely be on for 4 weeks while her bone continues to consolidate.

Her bone looks good so we would probably be taking off the fixator in 6 weeks if we didn't have the complication of infections and limitations with antibiotics. The current antibiotic is knocking back the infection but it should be working better than it is and we are 99% sure Mary is allergic to the next antibiotic: Bactrum. So if she were to stop the current antibiotic the infection would just come back if we left the current pins in.

Dr. Scott explained we would continue to take an antibiotic (We are going to try Keflex as of today), put the cast on even if the infection is still there and it will clear up once the pins are removed. He can make a window in the cast to check on it if need be.

He did confirm if the antibiotic isn't working at all she would develop a fever. She has NOT.

Current status- 8 days after we noticed the infection
Pen marks indicate where it was a couple of days ago

Either procedure we pick will be done on October 4 and takes less than an hour.

New pins: pro: keep range of motion/ Con: risk of another infection, complication with antibiotics and end up in a cast anyway. (Mary really doesn't want 2 new pins power drilled into her bone.)

Cast: pro: removes risk of infection complications/ cons: lose range of motion

We are leaning toward the cast. If we didn't have possible complications with infections I would actually choose a fixator over a cast but it's not worth it.

Dr. Scott explained that if a bone gets infected it takes a long time for it to recover.

I learned Mary does not have an ACL. It typically doesn't grow with this condition. Never knew...

Close up of bone growth

Close up of pins where infection is

front view

side view

Third Infection: another update

"Good news" - There hasn't been a huge change in the infection nor has she developed a fever . (Yeah!) It seems better in the morning than in the evening. We think keeping it elevated helps.

Surprise, Surprise, the infection has put a hold on using the new AFO (brace for her foot) and the brand new DynaSplint for her knee we just received last Thursday. Her infections always affect PT. PT on Thursday and at home sessions today seemed to irritate the infection. But it's always relative, I will take a regression in PT for the health of my child.

We have an appointment with Dr. Scott on Tuesday...I added a picture from tonight to the series below.

Third Infection: antibiotic working???

We are trying to figure out if the antibiotic is working. The photographer (oh yeah, that's me) is inconsistent but below are chronological pictures. This infection isn't goopy like the first 2 were, the goop below is polysporin we applied. It is sensitive to clean and touch and Mary feels pulses in the infected area. The pharmacists say it takes 4-5 days of an antibiotic to take full effect. Tomorrow morning will equal 4 days...she doesn't have a fever and temperament is OK.

Monday

Thursday



Friday



Sunday

We were reviewing her history tonight. First infection appeared on June 11, Second infection appeared on August 11, and we noticed the 3rd infection on September 17 but Mary admitted to feeling it on September 15.

3rd infection update

Mary is feeling ok. The infected area is swollen, red, and painful to touch but is fine if it is left alone.

We are back on the original antibiotic and and praying it works. We do not want to have to move onto to a much stronger antibiotic.

Mary pointed out that her first infection was in her thigh, the second was near her knee and this one is near her ankle. Unlike like the first two infections this one is not "goopy".

At PT today Mary got her leg extended to a -9 which is where she was in mid-June before she got her first infection. It took 3 months to get back.

Her ankle has been at 0 the past couple of PT sessions but today it went to a +1 for the first time ever. WooHoo! We just need the infection to go away quickly...

3rd Infection: here we go again

The past 2 weeks were very nice...but we are pretty sure Mary has another infection. This will be her 3rd one to date. We will call Dr. Scott tomorrow.

We are hoping we can try the 1st antibiotic again to see if it will work. We painfully learned she is allergic to the 2nd antibiotic (Sulfa) we tried when the first antibiotic wasn't knocking back the 2nd infection. We really don't want to have to move onto a new stronger one yet when we should have a couple more months in the fixator...the roller coaster continues!

Appetite is Back!

Mary's appetite is finally back! At first it was suppressed because of pain and then the antibiotics.

Practicing with Crutches and Building up time in AFO

Mary took her crutches to her PT appointment on Monday so they could help her practice using them. There is a video below:

Mary wore her shoe with the AFO to school for the 1st time on Wednesday. She almost made it all day with it on but Thursday and Friday she was only able to wear it for a couple of hours before he foot began to bother her.

Once Mary can stand on her left foot and has good balance she can start using crutches at school. I think we will bling them out. The pink helps people notice her so she gets run into less.

The brace for her knee is in and we will get it next week. We are hoping she doesn't have to wear it long...we are still working on getting her left leg straight and getting her foot flat on the ground but it's been a good couple of weeks.

Wearing A Shoe (1st time in 4 months)

We had to go find a shoe for Mary so she can wear the new AFO during the day. A shoe holds the AFO in place on her foot. We had to buy a much larger size than her foot measures so the AFO will fit and it is comfortable. I think that as her foot becomes more neutral that we could probably go down a size but we will see.

She wasn't happy about the AFO but once we found a size that worked she was so happy to have a shoe on for the first time in 4 months she asked to keep it on and wanted to WALK.

We are having to have her break the AFO in. She wore it 3 hours yesterday but I don't think it was on exactly right.

Today it was on better and she wore it 3 separate times from 1 to 2 hours before she said it was uncomfortable.

We discovered it is best to put the AFO in the shoe then slide the AFO and shoe on her leg as one piece.

Knee - 1st good report!!!

Just as we needed it to be, it was a good week!

On Thursday the "harder" of the two physical therapists was very pleased with Mary's knee. He said it finally has some "movement" and he measured -14 degrees. The goal is a full extension of 0 degrees. Recently she has been improving 2 degrees with her ankle and knee EACH PT visit. 

Mary had her follow up with Dr. Scott today and for the first time he was VERY happy with her knee. It doesn't look like the knee is sublixating anymore. He said we have finally moved out of the worry zone. He has been worried about her knee since May 29 which was only 19 days into this procedure! This was a huge relief because 8 days ago he was mentioning putting a ring back on her thigh to adjust the knee.

A cute story was Mary said she "didn't even do anything" to get her knee there. I about died. You never confess you didn't work hard :-) but the funny thing is she has done A LOT of very hard work to get it there...what she meant was she wasn't straining to get her knee to the point Dr. Scott got it to today meaning it probably could have extended even more when he was examining her.

He said her bone is looking good

He pointed out the "wave" as a result of adjusting the tibia 8 days ago

This picture shows the line from where the blue wire was

We are still supposed to use the dyna-splint on the knee (We ordered it last Thursday but it isn't ready yet) and he sent us over to get an AFO (brace) for her to wear to get her foot to stay neutral. Mary is pretty disappointed about having to use either of these devices especially since she is making such great progress but we think they are to get her over the hump.

Disappointed getting the new AFO measured

Fancy new AFO material- completely different than all of our previous versions

Here's the final version AFO- we walked out the door with

Mary has to wear a shoe with the AFO. Her foot has been so swollen we haven't previously been able to get her foot in a shoe. I was finally able to get her foot to go into a shoe a couple of days ago but it was tight and the AFO takes space so we are off to buy some shoes tomorrow.

Dr. Scott's prescription to Mary today was he wants her to get to using 2 crutches, then one crutch, then walk!!! We see him again in 2 weeks.

Recovering Well

I am reluctant to say too much but Mary is doing well.

• Her appetite is back for the first time I can really remember and she is actually asking for snacks. (Her tummy is very happy she is off antibiotics.)
• Without the thigh ring and foot plates she can often be found on the ground playing with her dog or toys. She can't do everything she used to BUT she can do a lot more and is not as sad about not being able to play the way she could prior to May 10.

• At PT on Saturday they measured 0 degrees for her ankle. It was originally at -15 and unlike the knee the ultimate goal is +15. Half way there!

ankle on the way to measuring 0 degrees




• They measured her knee at -19 degrees. The goal is 0 degrees.
• Dr. Scott didn't want to see us for 2 weeks but now because of his schedule we are seeing him on Friday, 8 days after the last procedure. Hope it's short, sweet, and all positive.
• Her patience is starting to wane but hopefully some good healthy progress will help her gain it back.
• Hoping no updates to the blog until after the doctor visit on Friday...