6 weeks post-surgery

I meant to update sooner than now, but we have been so busy!  The six weeks of recovery from orthopedic surgery went better than I had feared.  We head back to Gillette tomorrow to have Suchitra's casts removed.

The first couple weeks at home were really hard.  She weaned off pain medication pretty quickly, but the bar between her legs made the casts really heavy and she couldn't move  comfortably on her own at all.  So everything took a long time and was very physical for me.  I would not have gotten through it without the help of family, especially my mom.  As time went on, she became more mobile and able to move herself around.  She now gets herself around the house in the wheelchair very well.

While staying at home, mostly on the couch, was not the most fun August she has ever had, we did have a college student-nanny who kept things fun; I threw a huge birthday party for her about halfway through which gave her a big lift; and different friends and family made time to visit her so she had a lot of good quality time with a variety of people.

After she gets the casts off, she will be fitted with new AFOs.  I'm waiting for insurance approval on a walker that I believe she will need to use for several weeks before she is ready to get back to her crutches.  Her physical therapist is now coming to our house twice a week and their work together is excellent.

Homecoming and lots of new challenges

I have never been so worried about getting home from a trip, but things worked out okay and we made it just fine.  Gillette gave us enough pain medication to get through the next few days so I didn't have to go out to try to fill the prescriptions at Walgreens.  My cousin Erica drove us to the airport.  There were wheelchairs with attendants right inside the door, so I didn't have to search far, but I was so glad to have Erica there so I didn't have to leave Suchitra on the curb by herself while I found the wheelchair.  We discovered that by propping our suitcase on the footrests of the airport wheelchair, we could keep Suchitra's legs extended.

Getting through security was difficult because they didn't want to let her through with the suitcase propping up her feet, but somebody had the idea to put a plastic bin under her feet instead and that worked for TSA.  After I got through security myself, I looked over and there was a TSA officer signing Suchitra's cast!

Once we got to the gate, she was cranky and experiencing some pain, so I gave her more medicine.  That was a hard 45 minutes to get through.  And being moved in and out of her wheelchair was still very uncomfortable.  On the first flight from Minneapolis to Denver, they made us put the suitcase up in the overhead compartment for takeoff and landing, so I had to balance her very heavy legs on my knees and feet until they took it down again.  On our Denver to Portland flight, they let us keep the suitcase down the whole time and I was really grateful.

I tried taking her to the bathroom on the first flight and it did not work well at all - it was just too tight a space - very painful for her and difficult for me to hold her in position.  We tried again in the airport, but even the wheelchair-accessible stall was too small to fit her with her legs out straight plus me, the wheelchair and our luggage.  Thank goodness my parents were there to pick us up and we don't live far from the airport.

At home there were new problems to solve, like how to prop up her feet in our bathroom, how to fit her legs under the table to eat, and how to rearrange the furniture to make it all fit better.  Also, I had to take my car in to replace the seat belt that Tiller chewed through a few years ago, because she can't sit behind the driver's seat anymore, since the front seat has to be pushed all the way forward for her legs to fit behind it.  I had put off fixing it before because of the cost ($441! for a seat belt!) but this was a good reason to finally get it done.  My parents have been coming over to bring us groceries and other stuff we need and to make us dinner.  I appreciate them so much.  My dad got Suchitra a set of Carmen Miranda movies from Costco, which will be the perfect entertainment!

I had a rental wheelchair delivered here which has legrests for her feet and a reclining back.  It's more comfortable for her, but it's so heavy that I cannot lift it into the car by myself.  This is going to severely limit my ability to take her anywhere for the next few weeks, along with the problem of not fitting into public bathrooms.  Even though we'll be staying at home, we can put her into the wheelchair and take her on walks around the neighborhood.

Yesterday we went to our favorite hair salon, since we hadn't had time to get trims before leaving, and for Suchitra having shorter hair will be easier to take care of since she cannot take a bath or shower for the next six weeks (we'll be doing bed-baths).  She asked for an Audrey Hepburn cut and it looks really cute even with a little bed-head:

I guess Tiller must have been feeling left out of the whole medical experience because he came down with a nasty rash under three of his legs.  Jonathan, who takes care of him when we're gone, told me about it when he dropped him off, but I was so busy that I forgot to look at it until last night and it looked pretty bad.  I had some antimicrobial cleanser left over from the time he got a rash in his ear, so I washed him down and then put an old nightshirt on him so he can't scratch as easily.  Poor guy.  Good thing I'm getting to be such an expert nurse.

Suchitra hasn't needed any pain medication since yesterday morning, which is really great.  Her hip incisions look good.  My main concern at this point is getting her digestive system back in shape and keeping things moving along.  She also needs to be turned frequently to avoid pain and pressure buildup, as well as to keep her hip muscles flexible.  A Gillette nurse called to check up on us today and she said it sounds like Suchitra is doing great.  Emotionally she is in pretty good spirits although prone to fits of frustration at having to be literally stuck in this situation.  For such an active little kid, this will be a hard time to get through.  However, yesterday, Friday, marked one week already since the surgery.  So we only have two more weeks in which she has to have the bar between her feet and really can't move much at all.  After that, we will take the bar off and she can start walking a little bit and doing physical therapy even with the casts still on (Gillette gave us some flat shoes that strap onto the bottom of the casts).  On Monday I have to go back to work, so Suchitra will be at home with Rachel, her lovely nanny for the rest of the month.  Visitors will be more than welcome - just let me know if you want to come by!

I'll try to update periodically as her recovery moves along.  Thanks again everyone for reading.

Challenges

First of all, let me debut Suchitra's colorful casts.  Not the best picture, I'll try to get a better one later, but still, pretty awesome, huh?  As you can see, she has already collected quite a few signatures.

Today was a day of challenges.  It feels like our insurance company is trying to make this as difficult as possible.  I know, what else is new when it comes to health insurance?  The first challenge was that Providence will not approve us to get a reclining wheelchair with leg rests from Gillette, which we were going to bring back when we come back in six weeks to get her casts off.  We can get one at home, but this causes a big problem as far as getting to the airport.  I did not bring our wheelchair from home, since I was told that we would get one here.  We can't really use a regular cab since I can't leave Suchitra with the cab driver while I go in search of a wheelchair (MSP is not one of those airports where they just leave wheelchairs available near the front).  I called a medical transport company, but they wanted to charge $125, which I would rather spend on physical therapy (which Providence also won't cover enough of).  Thankfully, I decided to call my cousin Erica Timko who lives north of St. Paul and ask her for the huge favor, and she very kindly is going to rearrange her day to drive us to the airport tomorrow.  Thank goodness for the Timko connection!

And then to really add to my stress, the nurse just told me tonight that Providence won't cover Gillette's pharmacy to fill the prescriptions for Suchitra's pain medications to take home.  I will try to take the prescriptions to Walgreen's tomorrow morning and get them filled there.  She has transitioned from the epidural and IV and is now taking a major dose of oral pain medications - Oxycodone, Valium and Tylenol.  I don't think you can just quit taking those all of a sudden.  So we better figure out a way to get them somehow before we get on the airplane.

Before we came, I made a lot of phone calls to Gillette, Providence, and our primary care physician to make sure that the surgery itself would be covered; however, I didn't realize that we would have these specific issues with the wheelchair and medication.  I feel like Gillette could have helped to make sure these things would be covered ahead of time, since they know what has to be approved separately.  However, the only thing I can do at this point is just practice my patience and trust that things will work out OK somehow.

The other significant challenge of today was figuring out how to move Suchitra around with her new leg accessories.  She's a LOT heavier on the lower end now, and she was already on the edge of too heavy for me to lift before.  I really struggled today to move her around between the bed, wheelchair and toilet.  At first I was moving her with the knee immobilizers on, but that didn't work too well, and then the doctor came and said we didn't have to keep them on all the time.  And, poor thing, it is still painful for her to be moved, although each day gets a little better.  Of course, at home the setup will be different so we will have to develop new techniques.  With some practice, I think we will figure it out as best we can.

Casting day!

Things are moving right along here in the orthopedic unit.  Saturday and Sunday were uneventful - Suchitra spent most of each day sleeping, and when she was awake, she watched TV.  She is not as cranky as she was after the rhizotomy, but I am looking forward to her getting back to her non-medicated self.  Neither of us slept very well Saturday night, but they let us sleep in Sunday morning, which was nice.  They decided to turn up her epidural for Sunday night, and also give the Valium a little more frequently, in hopes that she would get more sleep.  This worked out well and we both slept pretty well Sunday night.  No sleeping in this morning though - an orthopedic resident woke us up at 6:15 am!

At about 9:15 the nurses came to take Suchitra to get her casts on.  She was taken into a separate room where we met a nice man named Laster.  He cut off her long bandages, which had a bunch of stuffing underneath them so when he cut them off, it looked like a stuffed animal's insides coming out.  Then he very carefully and expertly constructed her new casts.  They go up to just below her knees and all the way down to the bottom of her feet, though her toes are exposed.  I'll post pictures next time because right now she is prone and all covered up.  The casts are made of fiberglass and they have a bar in between to keep them positioned correctly.  It can be screwed on and off with a little key.  Then Laster signed her cast, "Laster the Caster."  Awesome!

Another guy came to fit her with new knee immobilizers, which she was a little disappointed about because we had thought that she might get a break from KIs while in her casts.  However, these are soft so she can wear them without pants underneath.  We don't know the wearing schedule yet.

After casting, she had X-rays taken to make sure the alignment is correct.  Then we came back here to her room where they turned off the epidural.  From now on she will have only oral pain medication.  Lots of questions yet to be answered, so I'm sticking close to the room to be here when people come by to tell us stuff.

Another successful surgery

Surgery went great.  Dr. Novacheck sounded very pleased.  He said that all three procedures went well, and that she has really healthy bones and tissue so they were good to work with.  There was another orthopedic surgeon named Dr. Healy who worked with Dr. Novacheck.  Each of them did one side of her leg, so it went pretty quickly.  She was done with surgery around 10:45, I think.  Then while she was still under anesthesia, they molded new AFOs, so she will get those after the casts come off.

I was able to go back to the PACU and see her around 12:15.  She came out of the anesthesia much, much more calmly than she has in the past, so that was a relief.  She also didn't seem as groggy and loopy, which I think was a result of using the epidural for pain control rather than the pump that she had with SDR.  It sounded like the medication spread out well from the epidural site in her back despite scar tissue from the SDR and tethered spinal cord surgery, so the anesthesiologist's choice was good.

After SDR, she recovered in the Rehab Unit, but this time she was taken to the Orthopedic Unit.  Apparently this unit was renovated just this past June, and I was super happy to see that we had a single room - no chance of a roommate - and it's very nice.  It has a shower in the bathroom and a fridge!  No more showering across the hall.  It's also quieter and just more pleasant.  There is a nice glider right next to the bed.

She recovered so well yesterday compared to what I remember about the first day of SDR recovery.  Some sleeping, but she also watched TV and talked on the phone.  She didn't fuss or cry that much at all.  The nurses came in periodically to administer pain medication and shift her position in the bed.  She has big puffy bandages all the way from her toes to her hips that look like this:

And now check out this big smile:

Last night, however, was a different story.  She slept pretty well from about 9 to 10:30 pm, but then not well again until 6:30 am.  Off and on dozing and lots of crying and fussing.... I think she was in pain from muscle spasms, and as the night wore on, she started to get anxious about not sleeping and that added to her upset.  She would wake up, start crying, we would press the nurse button, but then when the nurses would come in, she would quiet down, maybe because she didn't want to seem so upset in front of them.  This was pretty similar to the first night after SDR but I had forgotten.

She slept well from 6:30 am to maybe 9:45 am or so.  Then she had breakfast, got washed and her gown changed, and they just turned her onto her stomach to help stretch out her hip muscles.  She is watching the Disney channel right now.  I'm soooo tired.... maybe I can get a nap in this afternoon.

It sounds like today and tomorrow may be kind of the same.  Monday will be a big day though.  The epidural will come out.  Her long puffy bandages will be replaced by casts from the feet to below the knees.  These casts will stay on for the next six weeks; we'll come back here for a couple days in early September to get the casts off and get her new AFOs.

Thank you everyone for the messages.  I read them all to her and they make her so happy!

Back to Gillette

Suchitra and I flew to Minnesota on Wednesday after having a ball at the 11th Timko Family Reunion in Cannon Beach, Oregon.  We are so lucky to have such a cool family that has been reuniting either in the West or Midwest every three years from all over the country since 1984.  Spending time with family is pretty much Suchitra's favorite thing to do, so it was a blissful four days and difficult to say goodbye.  We are excited that the 2016 reunion will be held at Lake Okoboji, Iowa, not far from the farmlands of southern Minnesota where the family began in 1895 when John and Anna Timko, both immigrants from Czechoslovakia, got married.  Over the next 25 years they had 11 children, eight of whom survived to adulthood, the youngest one of which was my grandma, Philomine Timko Goracke.  The reunion is for the descendants of all of those eight children to get together to catch up, eat a lot, have a good time, and try not to get kicked out of our hotel rooms.  We used to send my grandma out in her nightie to placate the hotel security guards, but sadly she is no longer with us so we have to keep the noise down a little more than we otherwise would.

Monday's sandcastle competition - note Suchitra with the official judges, probably trying to influence their votes.

Our travel here on Wednesday was somewhat eventful in that when we checked in for our flight, Frontier informed us that the flight had been cancelled but they were able to re-route us so that we would still get to Minneapolis that night, but not till midnight.  Instead of flying through Denver we would go to Seattle on Alaska Airlines and on to Minneapolis via Sun Country Airlines.  I was a little dubious about trusting Sun Country Airlines to take us between two very non-sunny northern cities, but they did a fine job.  Suchitra is not a fan of last-minute changes and uncertainty, so I had to do quite a bit of soothing and encouraging.  I also shelled out for a fancy dinner at Anthony's Fish House in the Seattle airport with the beautiful enormous floor-to-ceiling windows.

This is right before she read the menu and picked out London Broil for dinner.  She is such an avid little gourmet carnivore.

So we didn't get to our hotel that night until almost 1 am, but at least we made it!  I have to mention how well she did walking through the airports - we didn't bring her wheelchair along, we only used airport wheelchairs a little bit, and she walked the rest.  Her endurance has improved markedly from a year ago.  She is able to walk much further with less fatigue.  About a month ago she walked all the way to a park near our house and then back for a total of 1.2 miles!  I was really amazed by that.  Her balance and stability are still quite poor and she falls a lot, especially when distracted or rushing, but SDR wasn't expected to change that very much.  The biggest change, of course, is that her legs are much more flexible and relaxed.  After a lot of hard work in physical therapy, this has led to her being able to climb and descend stairs extremely well, and she also has been able to dress and undress herself every day.  This wasn't possible before the surgery because her legs were so tight.  It has been a huge improvement for both of us!


Since her selective dorsal rhizotomy surgery last fall, we returned to Gillette once in March of this year.  At that time we met with Dr. Novacheck and Dr. Ward, both of whom were on the team that recommended SDR for Suchitra back in June 2012.  In March they confirmed that she should have orthopedic surgery to correct the misaligned bones that resulted from her years of spasticity.  We scheduled the surgery for today, July 26, 2013.

We arrived a day early so she could do another gait lab, which was a repeat of the testing she had done in June 2012 that gave the doctors the information they needed to decide whether she would benefit from SDR.  The gait lab involves a lot of measurements, as well as being hooked up to electrodes and then videotaped while walking back and forth, so they can study her gait.  It makes a computer image that is just like the images they use to create video games or digital animation for movies.  Also the floor is loaded with sensors that transmit information about how hard and where her feet strike the ground.  Then they do an oxygen test that measures her oxygen use at rest and while walking.  The whole thing takes 2-1/2 hours and she was pretty tired out by the end.  We ate lunch and chilled for a while after that.  We also paid a visit to the rehab unit where we spent five weeks last fall after her SDR.  We saw quite a few of the nurses who had taken care of her before so she was super happy about that.

Then we met with Dr. Novacheck, the orthopedic surgeon, to get his final recommendations.  He explained that he felt she should have three specific procedures.  One is a derotation of both her femurs.  Currently her femurs (the long thigh bone) are rotated inward.  In fact, you can kind of see in the picture below how her knees are turning in.  They will make an incision high up on the side of each hip, cut the bone, turn it, and insert a plate and screws to hold it in its new place.  Second, they will go into both of her feet through the heels and insert extra bone to lengthen and re-orient one of the bones in her mid-foot.  This will straighten out her feet and restore her arch (she is totally flat-footed now), giving her better stability.  Finally, they will go into the backs of each calf muscle and lengthen the superficial upper muscle which is still tight as a result of the former spasticity.  Because they do these separate procedures all during the same surgery, the whole thing is called SEMLS, for Single Event Multi Level Surgery.

The combination of these three procedures should result in better alignment all the way down her legs.  When she walks, you can see that her legs turn inward and sometimes her feet trip over each other.  That should decrease.  Currently, with her femurs out of alignment, her hip muscles and knee muscles cannot be strong at the same time.  So with femurs in the proper place, those muscles will get stronger and her walking will definitely improve.  Also, with the foot lengthening and arch restoration, she should have some improvement in her balance and she should be able to pick up her feet better than she does now - she drags her toes along the ground quite a bit.  Dr. Novacheck said that with these tweaks at the upper and lower ends of her legs, and of course further physical therapy, his hope is that her entire gait will become more consistent and stable.

I thought it was interesting that even though her hamstrings are still tight, he does not want to lengthen those muscles during this surgery.  He thinks that when her femurs are derotated, she will lose a little length in those bones, which will give the hamstrings a little room to catch up lengthwise.  Also, the other improvements may make a difference in her hamstrings.  He doesn't want to over-correct and then cause problems that wouldn't have been there otherwise.  I appreciate this conservative approach.

I forgot to ask him about the gait lab results but I did ask him this morning.  He said that the biggest difference is in how much her knees are able to bend when she walks.  They actually hyper-extend a bit, but this surgery should correct that.  Surprisingly, her oxygen usage was not much better than before SDR.  I thought we would see a gain there, since it really seems like she has better stamina than before.

We went swimming in the hotel pool and hot tub last night and had Thai food delivered to the room.  She slept really well and woke up with a positive attitude this morning as you can see by the smile on her face:

We came back to the hospital at 7 am this morning and she went into surgery at 8:30 am.  Before surgery she got to put on the gown that has a little hole in the side where they pump in warm air through a tube.  Nice.

We also spoke with the anesthesiologist who discussed two different options for pain control.  Last time she had a pain pump but this time he recommended an epidural, as it will involve less narcotics and risk of complication that could land her in the ICU.  The drawback to the epidural is that with the scarring in her back from the two previous surgeries (SDR and tethered spinal cord surgery before that) the medicine may not spread as well as needed.  If that happens they can change the pain delivery method.  As a lay person I always feel at a disadvantage in understanding these kinds of choices, but tend to go with the doctors' recommendations as long as they explain their rationale well enough, and the doctors here are really good at doing that.  It makes me think about what my clients must experience when I talk to them about their legal issues.

Suchitra didn't even want me to walk back with her when they wheeled her to the OR, and when the OR nurse called to give me an update, I asked whether she went off to sleep okay and the nurse said, "Yes, but she was so sassy we didn't want to put her to sleep."  She is definitely an expert at charming everyone she meets.  Next time I see her she will probably be more crabby than sassy, but I'm counting on Valium and the Disney channel to get us through the next few days.  We'll be here till August July 31 (earlier error - we're here just a week).  I'll write more about the recovery process in the next post.  Thank you for reading!

Goodbye to Minnesota

I can't believe this is the last post I will write from Gillette - we leave tomorrow about 4:30 pm and arrive in Portland at 7:49 pm.  I can't really say that the time has gone by quickly, but I can say that I am so glad we came.  I feel very optimistic that this surgery will make an enormous difference in Suchitra's (and my) life and we are beyond lucky to have had the opportunity to do it.

This past Wednesday we had a conference to plan for her discharge and returning home.  Staff from all of the departments who participated in Suchitra's care were there, and on the phone we had all of the key people from Peninsula Elementary in Portland, which was awesome.  Having them up-to-date on her condition will make the transition so much smoother.  Her physical therapist here and the physical therapist who will be working with her at home have corresponded separately.

We do have a lot of work ahead of us to realize all the benefits of this surgery.  On Monday she will start physical therapy at an outpatient clinic 4 times a week, after school, for at least the next month, then tapering down to 1-2 days a week.  On the days we don't go to therapy, we have a home strengthening program with many exercises to do.  We have a shorter home stretching program to do 7 days a week twice a day.  She needs to spend 30 minutes prone every day 3 times a day.  They are going to provide her with a stander at school so she can do one of the 3 prones in that.

We also need to build in activities throughout her day to reinforce all this, such as walking on her knees, crawling, and sitting cross-legged.  She is still too weak to walk more than a step or two without help.  However, she can walk upstairs quite well with help, so getting into our house will be OK.  Then once in the house she is supposed to either crawl or walk on her knees.  She should be walking more independently (with a walker) in a couple weeks or so.  She will have to use a walker at first, then back to crutches, just like she did before surgery.  Whether she gets to the point of not needing any assistive device is yet to be seen, but I have a feeling that her own determination will get her there.

This weekend my dad and I watched Suchitra's video from when we came here in June for the evaluation, and then I showed it to Suchitra.  The difference in her gait from then to now is so striking that it gives all of us great motivation to keep going.  When I get home I will figure out a way to post those videos on here because they are just so cool.  I will also try to keep posting periodically to let you all know about her progress.  Thanks so much for following us - it's so cool to have so much support!

At this point we plan to return in six months (at the end of February, brrr!) for another evaluation, at which time we will plan for the next and hopefully final surgery next summer.  That operation is called SEMLS (single-event multi-level surgery) and based on what the surgeon mentioned in June, she will probably need to have her femurs (thigh bones) and tibias (shin bones) on both sides de-rotated, as well as possibly something done with her feet.  The cool thing is that they can do all of those procedures at one time.  I believe that is a fairly unique way to do it, though I do not know yet whether it can also be done in Portland or not.  That's something I still have to research.  And of course it will all depend on her progress so I'm not positive that's what will happen, we'll just have to see.  I did understand that while the rhizotomy will have decreased her oxygen use by 30%, the additional orthopedic surgery will reduce it to 50% of her pre-surgery level.  That would give her a LOT more endurance for walking and other movement.

On Friday I scheduled her for swimming lessons starting next Sunday afternoon through early December.  She has done so well in the pool, and this will give her a fun way to build strength and endurance, since we can't go back to horseback riding until early January.

My dad is here to help us get back to Portland.  This afternoon we had an insanely good time at the Minnesota Twins v. Detroit Tigers baseball game at Target Field.  Beautiful day, really nice ball park.

The Twins didn't win but two pretty exciting things happened.  Miguel Cabrera of the Tigers hit a home run and batted two other runners in as well, which means that as of right now he has theTriple Crown - the most home runs, most runs batted in, and highest batting average in the league - which nobody has won since Carl Yastrzemski in 1967.  It all depends on what happens tomorrow with the rest of the games that end the regular season, but it would be pretty exciting if he were the first to win it in 45 years.  Plus he is a super humble and community-oriented guy so he deserves it.  We were sitting above left field and Cabrera's home run bounced right off the rail below us and was caught by a guy not ten feet away from us.  I ran down and took a picture of him with the potentially-history-making ball.  Then I told him why I was excited about it and he had never heard of the Triple Crown.

 
The other exciting thing was that one of the Twins players hit a Grand Slam home run - i.e. a home run with all the bases loaded so four runs batted in.  Unfortunately this was not enough since Detroit beat them with six runs.  Not to be disloyal to the Twins, but it was pretty cool that Detroit won since this gives them a shot at getting into the playoffs.  The Twins are now last in the league so they don't have any chance.

Here are the baseball aficionados enjoying their perch. Of course we could not properly enjoy the game without some Twins headgear: