4th medical procedure: removed last 2 blue wires

When we started this journey we were expecting 3 medical procedures:

1. to get the fixator on,
2. to get the thigh ring and foot plates removed, and
3. to remove the remaining fixator.

Today we had our 2nd additional medical procedure to the 3 described above. We had one on June 19 to repair loose hardware and do some intense PT, and today was to remove the remaining 2 blue wires since they seemed to be irritating her bone.

Today's procedure lasted closer to an hour which was 15 minutes longer than the last 2 procedures but Mary didn't take any medicine in the recovery room and she seemed to recover much easier. I was surprised because Dr. Scott was asking how she was feeling because he was working on her a lot so I thought she would be pretty sore.

Dr. Scott advised:

• Mary's tibia had "sagged" (the area of her bone that was cut on May 10 sunk in back towards her calf) so he adjusted the struts to correct the sag and decreased the struts by 3 mm.
• Mary's knee is still a challenge, (sublixation so it can't glide correctly) so we are ordering a Dyna Splint we attach to the fixator when she sleeps to apply slow steady pressure to help straighten her leg.
• He did say sometimes they have to add a thigh ring to adjust the knee so it is lined up correctly but we are trying the splint first. (Ironically, 2 other girls we know that are going thru this same procedure are having trouble bending their knees.)
• Walking will also naturally help correct the problem.
• We have been trying to fight for Mary to not have to get another AFO (brace for her foot) but Dr. Scott wants us to get it. Again, if she was walking on her left foot it would be the best therapy...
• He put the strut he removed on August 20 back in because of the sag in the tibia.
• The removal of the blue wires allows some torque with the fixator but the new bone growth compensates for the torque. Some torque is good because it stimulates bone growth.
• We asked if there is anything we should change to reduce the chances of a third infection and he said no, the wires and pins look good. The wires (which are where Mary had the 2 infections) are more prone to infections because they cause inflammation and move more than the big pins.

As I said Mary recovered really quickly today and never had any pain. She is off to school tomorrow. Mary isn't happy about the splint and the AFO but Mommy and Daddy know she is making great progress and just needs to get walking!

The good thing about all of the procedures is we have the drill down so we know what to expect overall and it's nice to often be working with the same people. (One thing I will never get used to or like is the smell of anesthesia wafting off Mary throughout the day.)

There was a 12 year old boy that was getting a fixator on today. I talked to them but had trouble thinking of what I should say. I didn't want to say anything to make them more nervous than they probably already were but I could tell the young man was going to do great.

We were also very touched by a teenage boy who was still trying to get his pain controlled from his surgery that made a point to say good bye to Mary when we were leaving.

Those experiences are what makes Children's a nice place to seek care.

Here we go again, entering the hospital at 6:00am

We were happy to see the same Nurse we had for the 2 prior procedures but we were in a different "room"

Mary was so cold the "ET" device didn't work on her finger so they put it on her ear

It was great to see Tom the Child Life Specialist who has become a friend while we are at the hospital

New Anesthesiologist to us but he did a good job too

Mary has the same OR Nurse Wendy as last time who actually remembered some info Mary talked to her about last time (on 8/2)

Look familiar? It's our same lucky booth where we wait

This time Mary didn't look as good when we first arrived, she was shaking from the anesthesia so they had her cocooned

Nurse Lisa

Resting in recovery

Normal for Mary after a procedure when we were getting her dressed she got nervous about moving her leg- so we took a break

Reading Calvin and Hobbs with Daddy

Leaving the hospital

Home enjoying Saltines- bigger appetite than normal

All wrapped up

No blue wires- down to 4 pins (from 16 pins & wires)

Finally better!!!

As of this morning, Mary's fever is totally gone, the rash just remains on her legs and the itching seems to be gone!!! WooHoo!

Mary didn't really sleep until 6:15am on Sunday night/morning because of the miserable itching, but last night she slept from 10:30pm-1:45am, and again from 6:00am-9:45am.

We plan for her to be back at school tomorrow.She has been very disappointed she hasn't been able to go since her first full day last Thursday.

It's not official but I would bet everything this weekend was all an allergy to Sulfa in the second antibiotic. Glad it's behind us and we are moving on! It was so frustrating that nothing we did helped the itching.

Pictures from last night and I am sure she looks even better today:

Feeling better- Monday night



Rash on Monday night- getting better

Sick Update

Saturday morning the fever spiked to 103-104, in the afternoon a rash developed all over her body, and at night the rash turned itchy. We communicated with the on-call Pediatrician who had seen her on Friday morning and Dr. Scott. We treated the fever with Ibuprofen (which you try to avoid when growing bone but a necessity with a high fever), we stopped taking the new antibiotic and started taking the original one in its place, and treated the itching with Benadryl.

The on-call Pediatrician graciously met us at the doctors office at 9:00 am on Sunday, took one look at her and said it looks like Roseola. We were to treat the symptoms (as described above). If the fever goes away in a day it is most likely Roseola. If the fever lingers longer it is most likely an allergy to the 2nd antibiotic.

It was a long Saturday and Sunday but around 11:00 on Sunday morning the meds began keeping the fever to a low grade fever and only the itching continues to be resistant to the meds which of course isn't fun for Mary.

I am betting its an allergy to the antibiotic because of the itching which isn't supposed to be associated with Roseola if the internet is all-knowing- but I am not a doctor and we all know the internet is not all knowing.

Mary has been pretty miserable and frustrated (her words) but Mommy and Daddy are actually ok focusing on getting her symptoms under control.

Little Sister has been very patient!

Saturday morning - meds controlling high grade fever

Saturday afternoon- rash and itching developing

Sunday morning- trying to get high grade fever under control again

Close up of rash- It is literally from head to toe

Sick (and TIRED!!!)

Mary loved school this week. We built up her time. The first day was only until noon for all students, we picked her up at 1:00 on Day 2, and she went the full day until 3:10 on Day 3. On Day 3 she did get tired in the 2:00 hour, and was achy and had chills when she was picked up but that is common for when she is tired ever since she got the fixator. 

Day 4 she woke up with a fever and she didn't feel good. She was disappointed that she was sick and couldn't go to school. Daddy took her to the Pediatrician and they said it could be one of four things:

• another pin site infection- but Mary doesn't seem to think it is because none of her pins/wires hurt,
• she could have "c.diff" from the antibiotic but they did a test and ruled that out,
• she could be allergic to the new antibiotic or
• she could simply have a virus- which at this point seems most likely.

The Pediatrician called Dr. Scott and Dr. Scott wants us to continue as planned: take the antibiotic until Monday, and he will take out the wires on Thursday. He believes the wires are causing a lot of the problems.

The Pediatrician told us the signs to look for that would indicate she needs to be seen again: 

• high fever,
• rash,
• bloody stools, or 
• cramping.

Mary was OK for most of the day. She didn't feel good again around 3:00 and at bedtime she had a fever, chills, and didn't feel good. 

Tonight we are all emotionally tired and Mary is tired of taking medicine. Poor girl just needs a couple of good weeks without any surprises/set backs. This whole process started off really well but has been a roller coaster since her first infection on June 12. I actually get nervous when things are going well because I know something will come up. 

Physical Therapy Pics, Update & Walking Video

Here are photos from Mary's PT session on Wednesday. She got great numbers on her knee and ankle extensions! The PT thinks she is doing really well and is back to where she was in June before she had her first infection causing the first set back. He even said we can start working her knee and ankle at the same time now.

"Tummy Time"- works knee extension





Tummy Time with leg off the table- working ankle

PT noticed how long her leg is now (when its straight :-) )

New exercise: Mary lifts leg up as high as she can and counts for 5

"Stand Talls" works on pushing heel to the ground and straightening knee

Look how close the heel is to the ground!!!




 

Measuring ankle at the end of PT: 4 degrees (A week ago she was at 15 and the goal is 0)!

Measuring knee extension: 20 degrees (it had been 30 and the goal is 0)!



Below is a video of Mary walking really well! We are struggling on how to get her to do this all of the time, not just during PT. Any suggestions...it's hard to break old habits!

First Day of School

Mary's 4th grade teacher let her go to school a day early to check out her seating arrangement and make sure she could maneuver around the classroom. She has a chair to prop her leg on and she took a pillow with her today so she could prop her leg comfortably.

Today was her 1st day. She told me she didn't like it, she LOVED it and was disappointed it was only a half day. She did NOT use her wheelchair today and she said she was comfortable at school. What a great start!

Trying to sit down as much as possible before school so she didn't strain her leg

The school continues to be very welcoming, accommodating and supportive of Mary. One less thing to stress about! Thank you!!!

Mary actually did pretty well the whole day. Her leg hurt at home because we squeezed in about the same amount of PT sessions as normal but in a shorter time period. Per Dr. Scott we are powering through the PT even though her leg may be more sore from the "dent".

Mary fell asleep very quickly tonight. :-)

Whew! A "dent" vs. a break

Mary's ankle was still hurting a lot this morning, she didn't look good, and she had no appetite so Daddy called the doctor. The pain was localized so the nurse said it might be  broken and she said to come in so Dr. Scott could look at it. Mary had x-rays taken then I met them for the doctors appointment.

Thank goodness it is NOT broken but rather "dented". Dr. Scott said the denting isn't good and it will feel like it is broken. He showed us the x-rays to show how you could see that the lower portion of the bone was reacting quite a bit to the fixator and the fall.

Right above the bulge on the left side you can see a small indention in the bone vs. the smooth angle on the right side

He doesn't want to do anything about the "dent" in the bone. He actually wants us to continue the PT with the ankle and knee even though it will be even more painful now.

Then he moved on to a conversation about how the bone is showing it is getting "tired" of the fixator. So he is going to remove the blue wires to see if that will help give the bone a rest. That will be on Thursday, August 30. He promises it will be his first case at 7:30 since it is so simple. We asked if it would be possible to remove the blue wires in his office vs. under general anesthesia but he said she would feel it too much and wasn't comfortable doing it without anesthesia. He did say he will try to talk the hospital out of giving her an IV and just use the mask since it will be so short. However, he will take the opportunity to do some Physical Therapy again.

He wants us to take a full 10 days of the new antibiotic because there is so much reaction from the lower part of the bone to the fixator. He had been prescribing 5 days the two previous times she took an antibiotic to "knock down" the infection.

A funny moment that made us all laugh was when Mary learned the 4 blue wires are really 2 blue wires that stick through her bone and stick out on both sides. If I could have had a picture of that look...

He did show us how well the area of new bone which is near her knee is filling in and he is VERY happy with the progress.

Close up of the new portion of the bone filling in

Then he moved into a conversation that Mommy and Daddy didn't like. He said if over the next month we keep having problems he will remove the fixator and put on a cast from her thigh down onto her foot. He said it would be good for her foot but wouldn't be good for her knee. Mommy and Daddy don't like the cast idea because a cast is hot, hard to move, prevents moving her knee or ankle, causes muscle atrophy, etc, etc. We don't feel like we have had too many problems but he is seeing how much the bone is reacting and that we have had to move onto the 2nd antibiotic and there are only 3 before you run out of options. I would choose a fixator over a cast any day but it may not be my choice.

The last thing Dr. Scott did was to remove one of the 6 struts that we used for lengthening so the fixator will be less weight bearing and her leg will become more weight bearing. We have the strut so we can check once in a while to make sure it would fit back on meaning the rings haven't migrated too much. We can also put it back on if need be which we may for a couple of days because Mary said the rings wiggle more without and cause her ankle to hurt.

Strut hanging off

Strut completely off

Mary was really uncomfortable today. Tonight 2 times when she went to stand up she had intense throbbing that made her sit right back down. So per Mary's suggestion she may be starting school tomorrow back in her wheelchair. Ironically, the crutches that she was dying to use on the first day of school resulted in the regression. Oh well, I am so thankful it is NOT broken!!!

Crutches

Mary has been dying to use crutches versus her walker. She REALLY wanted to use them on her first day of school tomorrow so after one of her PT sessions on Sunday afternoon I said she could try to use them and she was THRILLED.

But then she fell while using them, and hurt her fixator ankle. UGHH!!! It bled a lot and was sore through the night. I am praying there was no major damage and it doesn't set her back in the wonderful progress she had been making with her ankle.

The good news is the new antibiotic is working. Although Mary said at first that she liked the flavor better than the original antibiotic, now she says the grape flavor makes her nauseous.

Progress, No Progress

• Mary has made progress in how much of her foot she can put down during a PT session.

Can barely get the ball of her foot down 8/11/12



Can almost get her whole foot down 8/18/12



•  But we have to continually remind her to try to walk on her foot when she is moving about.
• She also made a great stride in her range of motion in her ankle in just a couple of days. She was at 15 degrees on Monday and on Thursday she was at 9 degrees.
• But there has been no progress with getting her leg to extend straight because her knee is sensitive/tender due to the 2nd infection which is near her knee.
• The first antibiotic didn't have an effect after 5 days so she started a RX for a different antibiotic today. She had only taken 15 days of the original antibiotic total since her first infection in June but she must have built up a resistance to it. The good news for Mary is she says the new antibiotic taste a little better than the first one and she takes it 2 times a day vs. 3 times a day.
• Mary is trying to spend the night at her Grandparents house tonight. In order to get in some Physical Therapy sessions in and make sure she didn't have a reaction to her new antibiotic before they left they went over in the early afternoon and will be picked up about the same time tomorrow.
• Mary was excited to be in charge of her PT and pin site cleanings. :-)
• We are very excited about some time to get some much needed things done around the house (like make the skirts she needs when school starts on Tuesday) and hopefully get one uninterrupted night sleep!!! We have had one uninterrupted night sleep since May 10 and that was on August 2 after the removal of her thigh ring and foot plates.

Mary is motivated to do PT now

We had an appt. with Dr. Scott today and Mary's bone is consolidating very well.

Close up of consolidation

Dr. Scott said the tibia looks good (it is no longer protruding forward) after our additional turning of the struts.

We know she has an infection at her top inside blue wire but he could tell from the x-ray above there is an infection at the bottom inside blue wire too. (I guess the thin line near the bone that you can see on the first x-ray above but that you probably can't see on this copy of the x-ray signifies an infection.) She is to take the antibiotic she started yesterday for 4-5 days again to see if that is all she needs to knock it back. Mary didn't sleep from 1:30 to 5:30am on Sunday night because of the infection but was back to her usual only waking 2 times a night last night.

Dr. Scott is very happy with how her bone looks but is now focusing on her foot and knee. Since she can't get her foot flat yet, he has ordered a new AFO (brace) for her to wear on her foot when she isn't standing to help it get back in position. This was disappointing to Mary because we thought she was done with an AFO.

We have an appointment in a week so he can check on the infection, and see how her foot and knee are doing. He may also order a brace of some sort for her knee.

The news of the brace(s) seriously motivated Mary to do her PT. As soon as she got in the car she suggested we do more "tummy time" which works to get her knee extended and when she got home she made a PT chart.

Dr. Scott can remove the blue wires as soon as she is where she needs to be with her foot and knee but it will require anesthesia again just because she would be too freaked out if he did it when she was awake.

A side note is that at Mary's PT session on Monday with the "easier" Physical Therapist, the Physical Therapist explained to Mary that PT needs to be a little uncomfortable now in order to make progress. That was the best person for Mary to hear that from so I was very thankful for the comment.

Dr. Scott said she can return to school but will need to keep her leg propped on a chair so it isn't bent all day.

Daddy had a brilliant idea of stopping the use of her wheelchair so that she can start building her endurance. We have only been using it in public anyway but now she will use her walker at all times. She doesn't move fast by any means but she moves. Mary REALLY wants to use crutches over her walker now but Mommy and Daddy won't let her until she can put weight on her foot so she can catch herself if she falls. The ideal is that she can walk without any device very soon.

Now she has a lot of motivation and I am excited to see the progress as a result of her personal motivation...

Ups, Downs, and 2nd Pin Site Infection

Things have been looking "up" since the partial removal on 8/2/12. Last week Mary did successfully attend a sewing camp for 2 1/2 hours a day every day and learned to sew a bag.

Our new focus was trying to get her to bear weight so she can begin to walk which will be the best physical therapy for her body.

She can now get the ball of her foot "down" (at 1st she could only touch her toes.)

(I know it looks like there is still a pretty large difference but it's because her leg is still so bent. Once it's straight you will be able to tell the length she picked up.)

Other than focusing on getting her knee straight I have began to worry how to build her endurance so she can comfortably and realistically get back to school full-time when it starts next week. (She only made it 2 1/2 hours out of the 6 hour a day camp.)Today Mary had some very fun "ups" on a swing (now that she can swing again since she had the thigh ring removed.)

She had really fun "downs" going down a small ramp in her wheelchair and cruising across a playground.

But last night Mary said the area around the inside top blue wire was sensitive so we gave her Tylenol before bed for the 1st time in many days, then during the night she couldn't sleep because she said it was burning so we gave her a second dose. Today her leg is very sensitive and easily in pain which is exactly the same symptom she had last time she had an infection so we will call for a refill for her antibiotic tomorrow. Such a "downer" since we stopped the proactive prescription of antibiotic after the partial removal 5 days ago and now she has an infection. Besides the hard part of having your child in pain is it will most likely set back her Physical Therapy like last time. Ughh! 

Pins/Wires 1 week AFTER partial removal

Thigh pins immediately after partial

Below compares the sites immediately after removal to 1 week later. Everything has healed nicely. Especially the blue wire sites in the foot that as Mary says looks like small bug bites that don't itch. 

Thigh pins 1 week after partial



Outside wires immediately after partial

Outside wires 1 week after partial



Inside wires immediately after partial



Inside wires 1 week after partial