Update: Week 2

Mary has had a great week. She hasn't needed any meds since Monday (1 week after 8 plate and foot surgery). She still isn't completely mobile on her own yet. She scooches (vs. walking) up and down the stairs and needs help lifting her leg when she sits down. She has started using her crutches some this week. 

Good news is her doctor had to change her appt up a day. So on Monday (2 weeks after surgery) she should have her cast cut down to below her knee. She will have her knee back and the cast won't be so heavy. Mary will get some practice moving around with the shorter version and she will return back to school on Tuesday.

Mary really likes getting outside and going on walks. She uses her wheelchair for that.

So far so good. 

Transition Off Nerve Block

We turned off the nerve block at 8:30 am on Friday (Day 4). They said the medicine typically takes 6-8 hours to get out of the system. Mary wasn't experiencing much pain all day but she did take Tylenol and Ibuprofen in the afternoon. 

We removed the nerve block catheter completely at 6:30 pm. It was as easy to do as they said it would be. The hardest part was removing all of the tape but since they gave us the spray that dissolves the sticky tape that was even easy.

The only uncomfortable feeling after the removal of the catheter was the annoying itchy cast feeling. It took her longer to get to sleep because of the itching but she had another good night. 

So it seems that the nerve block was a huge success and we would recommend it. It only affects the area needed for pain without sending medicine throughout the rest of the body causing unpleasant side effects. It controlled the pain wonderfully and was easy to remove. 

It seems like the hardest part is behind us now. Now we are looking forward to becoming more and more mobile. Mary is getting around with her walker because she has a long cast and a wheelchair for walks. In 10 more days the cast will be shortened which will let her start using crutches and working on bending her knee that is currently in a cast. She is beginning to move her leg more on her own but still needs help lifting her leg at times and to go downstairs.

It is nice not to have to worry about the catheter tubing and carry the bag of medicine around.

Status: Day 2 and 3

Wednesday and Thursday have been great. Mary has slept all night the past two nights and has only used Ibuprofen for pain if anything. She has been feeling well enough to do homework and go for walks.

Tomorrow will be Day 4 so we will turn off the nerve block in the morning to test to see if she is over the major pain in her foot. If there isn't a lot of pain in her foot we will remove the nerve block from her hip. When the nerve block wears off she will experience the same feeling as when your leg falls asleep (it was pretty uncomfortable when the nerve block wore off after the fixator surgery). If it's the pins and needles feeling alone we will remove the nerve block catheter from her hip but if her foot is really painful we will turn the nerve block on again for another day and try again on Saturday. 

Nerve block medicine holder, dial and tubing

Bag that holds the nerve block medicine

8 plate and Osteotomy in Foot Hospitalization

They were right...this procedure was so much easier than getting the fixator on. 

pre-op

choosing cast colors

wheeling into OR listening to jokes

The anesthesiologists were great about our request to put her under before giving her an IV because she is terrified of needles. Of course, the procedure was an hour longer than we expected it would be and it was because it did take them longer to put her under. Her hands were so cold it took them a long time to get the oxygen saturation monitor to work. They actually had to put one on each hand. The anesthesiologists were very personable and were telling her jokes which she loves. They totally respected our wishes but did explain afterwards that at her age it is better to use an IV because the mask takes a lot longer. 

beginning of recovery

unveiling cast

This time they used a continuous nerve block vs. the shot that wore off after 16 hours with the fixator. It worked (and is still working great- we came home with it and will remove it at the end of the week.)

I didn't get pictures of all the x-rays yet but Dr. Scott was able to do the 3 items: 

• 8 plate in knee to straighten her leg which will come out in several months, 
• an osteotomy (break the bone) in her 1st metatarsal and put a pin in it to straighten her foot (the pin will be removed in 4 weeks), and 
• an osteotomy in her 5th metatarsal to make it even with the rest. He used a plate there that won't have to come out since he knows she is so freaked out about having the pin removed. 

before

pin and plate

We weren't in recovery very long before we were moved to our room upstairs where we stayed one night.

Moving up to room

Mary was in no pain and even got up 4 hours after surgery and walked! That took 4 days last time. It isn't as major of a surgery but I think half of it was just having the experience of how to deal with something big and heavy on your leg and already knowing her to use a walker. 

working with PT 4 hours after surgery

Walking!!!

I was nervous going into the night because that's when the pain meds for her knee where the 8 plate was put in would be wearing off and that was miserable last time. But she didn't feel any pain until 1:30am but even then it was very manageable with 1-2 doses from the PCA. She didn't really sleep until 3am but most of that was just because she was in a noisy hospital with people coming in and out a lot.

We were woken up at 6:30am by the Orthopedic Resident who was reassuring that there was no rush to leave but advised we needed to be cleared by the pain team and PT. Unlike last time, I was confident we could leave and didn't feel the need to stay. 

Good appetite for breakfast unlike last time when she didn't each much the 5 days she was in the hospital

Her knee was bugging her in the morning but not horribly. By the time PT and the Pain Management team came by, we tested the drug she was being moved to from the PCA for her knee and we had our prescriptions it was 1pm. It was a good idea to give her a dose of meds for her knee before we left the hospital so the car ride which is longer from this hospital wasn't uncomfortable.

Getting IV out- last thing before leaving

Dressed and ready to go home

She fit in our own car this time. We didn't have to borrow our friends car this time

At home we gave her regular Tylenol an hour before the stronger knee medicine from the hospital would wear off and when the stronger knee med wore off the Tylenol didn't seem to be giving her much comfort so we gave her Ibuprofen which did seem to work. The nerve block is working great on the foot which is where the most pain will be but the other med is for her knee. I started to get worried again. I realize this is all so much easier now that we have experience but I am also apprehensive with the knowledge from last time about pain and was starting to miss the hospital. The ibuprofen worked and she was comfortable and actually fell asleep at 10pm. 

She did get physically wiped out from going up the stairs and getting ready for bed.

Every day the pain should be less (should be much better by day 4) and we do have the stronger meds to use for her knee but are trying to avoid it because of all of the unpleasant side effects. 

The new (to us) hospital was fine and Mary said she would go to either. I prefer the one closer to home but this hospital was ok. 

We have an appointment in two weeks to cut the cast below the knee. That will make this process even easier. Unfortunately we did find out that I misunderstand about the "walking cast". I thought it would be one of those boots but no, it's a hard cast that she will be able to bear weight on. Mary was pretty disappointed when she heard that...

Final Prep for "8 Plate" & Straightening Foot

We did so much planning and preparing for the leg lengthening but for this next phase: 8 plate to straighten her leg and procedure to straighten her foot there hasn't been that much. We are doing the normal prep but most of it requires pulling out all the stuff we had for last time. 

We had pre-op on April 3. It does start making it all real when the room is filled with 4 people: Doctor, Physicians Asst., Nurse, and Physical Therapist. Dr. Scott really wants to fix her 4th elevated metatarsal while he is straighten the first metatarsal because he thinks it will become a problem even though it doesn't bother her now. It makes sense to do everything that needs to be done all at once but at the same time, he doesn't want it to prolong the recovery process that he has already promised her which is 2-3 months. He also acknowledged that sometimes you try to do too much at once and one thing can complicate it all. He has added it to the list to do but will play it by ear during the surgery.

Mary's biggest fear about this procedure is having a pin in her foot that will be removed 4 weeks later in the doctors office. Now she may have 2 pins in her foot. That will be a fun visit. :-)

When the nurse was filling out the paperwork for the handicap placard she decided to give us a permanent one so we don't have to keep going back but I have to say it bugged me and I almost tried to tell her we only needed a temporary one but I didn't. I think I didn't like the reality that we will be needing it again, and again. 

That night we pulled out the walker and crutches to make sure they would still work and they do. I didn't like seeing them. I have never been fond of the walker. In particular, the sound the walker makes that I can remember when she would get up at night and go to the bathroom when she couldn't sleep last time. 

The next step was the call regarding anesthesia. My hubby did that and it was good other than at this hospital they do the IV first. He explained Mary is terrified of needles and should be given gas first before giving her an IV. They made him nervous because they said it's up to the doctor that day. So I reached out to Dr. Scott's nurse and she confirmed Dr. Scott would support whatever Mary wants. We feel better.

Then the wheelchair was ordered and delivered. Again getting more real and real to see a wheelchair in our garage. 

The good news is that the wheelchair and walker should only be necessary for the first several weeks then she should be fine with regular crutches and moving into a walking cast. 

They called Thursday night and gave us the surgery time. We are to arrive at 7am for the 8:30am surgery. It will be 90 minutes even if he does do the extra pin in her 4th metatarsal. 

On Friday Mary went shopping to get new ribbon to refresh her walker with her good friend and today Mary, her sister and I pulled the old pink duct tape off and changed it to gold with the ribbon she bought with her friend. 

Tonight before bed Mary asked what she was going to wear to bed when she had her cast on because she realized the pants she wears to bed won't fit over a cast. (Last time I had adjusted all of her pj's.) We realized she can wear shorts that she has and she was happy with that. I asked her to think through to see if she thinks there is anything else we need to be thinking about and she can't think of anything either. 

My hubby has gotten into minimizing germ exposure as we approach surgery on Monday so we are sticking closer to home as we get closer. That definitely makes it real.

My younger daughter has had the most concerns as we approach this one. I don't blame her since our last experience was so long and at times very hard but tonight she told me she is feeling better. I just keep acknowledging her but reminding her this shouldn't be anything like last time.  

I am most nervous about going to another hospital. The last time we did that we all hated it! This is a children's hospital but it's further from home which is a bummer since we can't just run home and could have traffic to deal with. 

Two days away...

Surgery Date

It took a week to get some surgery dates. We were given 4 choices and Mary selected the soonest date which is less than a month away. 

Her priority is to be fully recovered for 6th grade and volleyball in the Fall. 

The surgery will be at a new hospital for us because Dr. Scott doesn't have an opening at the hospital we prefer until the middle of July which wouldn't allow enough time for Mary to be recovered for 6th grade in the Fall. This hospital is also a children's hospital which is a requirement for us but it is further from our house. We can't really complain because we live in an area with 3 Children's hospitals within an hour from our house.

Mary is handling these surgeries with such maturity. Mary has a lot of events this spring but we think she can attend most in a modified way but she is ok if she has to skip some completely. It's not what she prefers but such maturity in prioritizing and accepting the situation!

Her parents are so much more casual about the upcoming procedures too. The ex-fix does require so much prep but for these two procedures we can just use all the stuff we still have from the fixator. I did review the tips page on my blog to make sure we weren't being too casual and I think we are ok.

We have pre-op next week. The surgery date will be here very quickly. I hope there are no surprises involving the amount of pain, length of recovery, etc.

Mary has started thinking about colors for her cast...currently leaning towards pink, yellow, etc. -Spring colors.

Phase 2: final plan and info, waiting on surgery date

We had our appt. with Dr. Scott on Tuesday. It was very similar to the last appt. in December other than we took x-rays to verify what Phase 2 will consist of.

Mary's (FH) left leg is knocked knee'd so Dr. Scott will put in an "8 Plate". This is a very common procedure with FH kids. A professional explanation can be found at:
http://us.orthofix.com/ftp/assets/Product/Product_Files/eight-plate/8P-PE.pdf 
My explanation is it stops the bone it is attached to from growing so the whole leg straightens as the leg grows then the 8 plate is removed. If we were doing this alone it would be a 1 hour outpatient surgery, with a 3 week recovery. There is a minor 2nd surgery to remove the 8 plate when the leg is straight which is usually months later. 

Knock-Knee

But...Dr. Scott will be doing a 2nd procedure at the same time. Mary's metatarsals are crooked in her left foot. He will add a bone wedge to her (FH) left foot with a pin to help straighten it. The good thing is this should make her foot larger which is the big benefit for Mary. Her feet are currently 4 sizes different.When examining the foot x-ray he had an idea for the base of the metatarsals but he kept it a secret. I am pretty sure that means he didn't want to freak Mary out with it. This is the procedure that requires non-weight bearing and makes recovery time 2-3 months.

Once again he offered to work on any scars but Mary is hesitant. He wants to make them "more like a line than a moon." I need to ask her if she doesn't want to because she likes them or if she is concerned about the procedure to "fix" them. She has no concern showing them to the world still which I love. 
  
I did verify other than not having an ACL and having a shorter fibula (80% of normal) she does seem to have all other bones, etc. The last 2 metatarsals in her left foot are fused together. The bones in the back of the foot are aligned well but they are also fused together. Her arch is flatter than normal so he wouldn't do anything to it.

Dr. Scott took a hand x-ray to determine her "bone age" meaning how much more growing she has left in her. She is older than her birth age, but the growth centers are still open, so she appears to be "12" not 11. This means since we are only trying to get 1 more cm. to make her legs more even we are still fine on time but he wouldn't go beyond next summer.

x-ray of hand determined "bone" age of 12

Dr. Scott talked about either doing an 8 plate on the "regular" right leg now with the other two procedures on her left leg, or the operation where you stop the growth in the regular leg next summer (it's too early to do this procedure now based on her bone age). He offered to do both legs at once which sounds appealing to get it all behind you but Mary had a great question, "How will I walk if we do both legs at once?" To which he responded "You can walk on right leg but you won't want to." 

Stopping the growth is a quicker process but there is a chance of over correcting. The con to the 8 plate is it takes longer and requires 2 procedures to put it in and to remove it. Oh yeah, and the problem of mobility. 

He wants to "fix" the left leg sooner rather than later because if the 8 plate on the left (FH) leg doesn't work now then we can do another fixator next year.

Dr. Scott predicts that as an adult the current callus near her left pinky toe will be a problem. It is caused by her bones not being at the same level. Its an "easy" fix, essentially you break the bone and it will heal at the "normal" level.

Dr. Scott, Mom, Dad, and Mary are all leaning towards only doing the procedures on the left now, not both legs at once. My main reason is although it sounds great to get it all behind her, there is no promise it will be all behind her. This is more art than exact science. It sounds like it would be miserable doing both legs at once and if the left 8 plate doesn't work, it wouldn't be the last procedure anyway. We need to try it then go from there.

When we do the left leg only the process is:

• Inpatient for one night for pain control,
• Out of school for 10 days (it would be a month if we did both legs at once)
• Short cast initially with a brace on her knee for a week or two,
• Then get her knee moving for a week or 2,
• Take out the pin in the foot after 4 weeks, (in his office which freaked Mary out),
• Then she would move into a walking cast for 2-4 weeks 
• So by 8 weeks, she is completely free -out of casts and would start regaining mobility.
• he said to plan for 3 months to be conservative. 
• Office visits are less frequent than with a fixator: after 1-2 weeks, then another 2 weeks, then a month
• There is a much lower chance of infection than with a fixator
• She would have a wheelchair initially and to use with long distance but could mainly use crutches. 

So we have all reacted to the news of these additional procedures that we didn't know were coming in a much calmer way than with the fixator- especially Mary! However, we have been waiting for a surgery date since Tuesday and I have to admit I am starting to lose my Zen attitude and my obsessed planning gear is kicking in. 

When I called to schedule the surgery on Tuesday he was already booked into July. Mary's only request is that she is ready for the beginning of the next school year or at least for when volleyball starts at the beginning of October. The last week of June would be ideal. The 2nd week of May would be my 2nd choice. However, it is looking like it will be a random day in April...he is trying to find more OR time.