More Sleeping, More Exercises

For the next few days, I don't feel like we'll have much to report.  Eliza did a lot of sleeping again today, and we worked on her PT excercises.  Now that we found a comfortable cushion for her wheelchair, it makes it easier for Eliza to spend time other places than her bed.  Here she is having breakfast in the lobby this morning.

Each day she is gaining more range of motion in her legs.  We still have to move them for her, she isn't able to lift or move her legs on her own yet.  She has improved greatly in her ankles and can move both, even the one with the hardware removal, quite well.  Today we could lift her legs so much higher than we could even yesterday.  After her casts came off, we could only lift them a couple of inches off the bed at most.  

We will keep working each day so she will be strong and ready to start standing again when she goes back to Dr. Novacheck in a couple of weeks.

Sleepy Day 

Eliza spent most of today sleeping.  Yesterday she was awake much of the day and now I guess she needed more sleep.            

She enjoyed a FaceTime call from her cousins.  Freddie and Charlotte each read her a book and they wanted to see her boo boos.  

Having a chance to FaceTime friends in Traverse City was made easier by the snow day there today.  

Today was also the day we figured out how to make a shower work.  It took 2 shower chairs and lots of towels, but she did it.  We also found a cushion to help make her wheelchair more comfortable.  Hopefully now she will be able to sit in her chair and spend time with us in the common area of the hotel room without her back bothering her as much.  Each day seems to bring more strength.  

     

                                                         

At 'Home'

Today's agenda included laundry, cooking, at home physical therapy, and a walk out to the lobby of our hotel.  All really exciting activities :).  It is nice to be out of the hospital and taking care of things on our own.

Eliza got up in her chair in between naps so she could spend time in other places than the bedroom.

After working with the knee immobilizers, we got them to fit better.  I think the problem is that her legs are going to be uncomfortable no matter what she does right now.  She's trying to get used to the way her legs feel and gaining confidence in what she is able to do and how to do it with the least amount of pain and discomfort.

Part of that process is the physical therapy they sent Eliza home to work on each day. Right now all of the exercises are pretty passive and require one of us to do the moving of her legs for her.  She is able to wiggle her toes pretty well now, and can move her right foot up and down slowly.  Her left foot has only a little motion, but that is where the hardware from her last surgery was removed as a  part of the surgery last week. When she left the hospital yesterday, she couldn't move her legs on her own at all.  Though she still can't lift or move them yet, she is now able to scoot herself in her chair or in bed.  We can raise her legs higher already and today can bend her knees a little bit.  It might not seem like much, but that is pretty great progress in just a day or so.  Getting to her stomach and spending time in the prone position is probably the most challenging exercise, but she did it with no complaints!  

We enjoyed spending time with Dan's cousin, Ben, this afternoon.  It's nice to have some family and a few friends of friends living in the area.  The visits give us something to look forward to on our otherwise quiet days.

    

This evening we took Eliza to the lobby to enjoy the fireplace.  Living in a hotel for more than a few days is something new to all of us.  We are finding ways to enjoy the experience.  Eventually, we  hope to be able to take Eliza on some outings, but for now we don't have a safe way to transport her.  So we are thinking of ways to keep tomorrow interesting...  Maybe card games.   

Out of the Hospital

This afternoon Eliza was discharged from the hospital.  Dan and I weren't sure if she was ready to go, or if we were ready for her to go.  They would have let her stay another day, but Eliza was very ready to go 'home'.  Home for the next few weeks is an extended stay hotel in a nearby town.  Before we left, we had a delightful visit with Sue Zell's sister-in-law.  It was so kind of her to send a visitor when we are so far away from home.

After feeling overwhelmed about how we get our daughter, whose knees have to remain straight and can't bear weight on either leg, into our car, we decided to hire a handicap accessible taxi.  It actually worked just fine to get us to where we needed to go.  

Eliza is still doing well, but it is really hard.  It's painful and her stomach is upset by medication and everything else.  Even a fairly simple act, like getting in and out of bed, is a long and difficult process.  The knee immobilizers don't really fit quite right and don't give her confidence that they will support her knees and avoid pain when she transfers in and out of her chair.

Even though we all realize how fortunate she is that this is a temporary situation, it is a hard reality  right now.  We also realize how far she has come already in the last couple of years and the hope of even better mobility and reduced pain in the future.  Today was a day of many emotions.

On the good side, just now we had a yummy dinner, prepared by grandma.  Eliza reports that her pain is fairly low, even though its time for her next dose of medications.  Ice cream will be a treat later tonight!  Both Eliza and I are grateful to not sleep at the hospital tonight. 

  

Big Day

Eliza accomplished many things today and she is holding up really well tonight.

First was the removal of her casts.  They were huge, and heavy, and Eliza reports that they were also very hot.  That isn't surprising with the amount of cotton wrapped around her legs before the plaster and bandages.

The cast removal was pretty painful, as you can imagine, because they had to move her legs around quite a bit and they are very sore.  It was such a relief to have them off and exciting to see her legs.  They really are noticibly straighter than before.

Next she went for x-rays.

This is one of her legs, but both of them look similar in the x-rays.  It's really amazing to think about all that she went through on Tuesday and that this type of correction is even possible.

She now has knee imobilizers to stabilize her legs to help reduce pain.

This afternoon we also took a walk around the hospital, had a visit from physical therapy, and she even took a shower.  After a full day, Eliza's relaxing with a cup of tea and movie.  My guess is that she'll be asleep before too long.  Her legs are really swollen and her pain is on the higher side of what she's reported today, but I guess that is to be expected.  She really is doing remarkably well.

Second Day After Surgery

Generally speaking, there isn't much to update today.  Most of the day was spent resting again.  Eliza has a lot of healing to do and the big casts and epidural are best suited for staying put. This evening Eliza did get into the wheelchair and took a ride to the family room down the hall.  It was good to see her up, though the process wore her out.  Not only was it physically taxing, it's scary to have someone move your legs for you after such a big surgery.  The nurses were very gentle and Eliza's upper body strength really helped everything go smoothly.

The anesthesiologist that was with Eliza in surgery stopped by to check on her too.  Tomorrrow he'll take out the epidural after she has the soft casts removed.  At that point she will transition to all oral pain medications and 'ki's, which we learned is what the staff call her knee immobilizers.

We did have a delicious dinner from our favorite Thai restaurant, Sawatdee.  It's become a tradition that we eat there at least once every time we are visiting Gillette.

Seeing the other patients and meeting their families in the Ronald McDonald room is helpful and also humbling.  The stories about their kids, many of whom are significantly disabled, are stories of strength and perserverance.  If your family has to go through something like this, Gillette is the place to be.  They do these types of surgeries all the time, and everyone on staff seems to know how to care for the patients and their families during the specifics of recovery from orthopedic surgery.  Tomorrow will be a big day for Eliza.  We know it will be hard, but it helps get one step closer to leaving the hospital and ultimately, recovery.

A Quiet Day

This morning started off very early with a visit from Dr. Novacheck and the anesthesiologist.  They are pleased with how Eliza is doing and told her that the next couple of days will be fairly low key to focus on resting and healing.  Thankfully the epidural is doing a good job of pain control.  Generally speaking, she seems to feel pretty good.  There was a time this afternoon when her pain increased, but additional medications and some ice helped take care of it.

Eliza's had a few guests that helped brighten her days in the hospital so far.  A therapy dog, a hospital volunteer that brought crafts and spent time visiting with Eliza, and these two baseball players.  I'm sorry to say that I don't know anything about professional baseball and don't know who they are, but they were very nice guys and seemed to really care about the kids in the hospital.

Tomorrow should be another quiet day, followed by a big day on Friday.  Her soft casts are scheduled to come off Friday and she'll switch from the epidural to oral pain medications.  

The surgery is behind us

 

Here is Eliza getting warmed up before the surgery this morning.  4.5 hours after we left her in the operating room, we had the report that surgery was nearly done and everything went well.  Pictures were taken of her legs before and after surgery, and the difference is amazing.  It will be awhile until we see them in person, or in action, but it seems like it has to make a significant difference in Eliza's mobility and will reduce ongoing pain.

The surgeries today included the removal of the hardware in her left ankle from surgery 2 years ago, and a 'femoral de-rotation osteotomy' above both knees.  For the next first 2-3 days she will have an epidural in place for pain control.  Compared to the last surgery, this seems like a big improvement as she is mostly numb and won't be relying on such heavy doses of pain medication.  Hopefully she will be discharged in 5 or 6 days, but until mid-February she will not be able to bear weight on her legs.  We don't yet know exactly how that will all work once we have her in our temporary 'home' in Minnesota, but the staff here at Gillette will help us figure out all of the details before she leaves the hospital.

This is what held her tibia together after her tibial de-rotation in 2014.  

These bandages protect all the incisions, they go from her toes to her hips.

Right now Eliza is doing really well.  She just woke up from a nap and is now able to drink some water.  We know to expect ups and downs over the next days, but things are good this evening.  Thanks for all the concern and well wishes.  It does make a huge difference for all of us.   

 Tomorrow is surgery day

We arrived in St. Paul last night and used today to get settled in our home for the next 4 weeks.  There was a lot of work to get organized and packed for being away for so long, but we did it.  

Our trip from Traverse City was made more enjoyable with a stop to visit my brother and his family near Chicago.  

 

Tomorrow we have an early arrival at the hospital.  After planning for this for so long, it's hard to believe the time is actually here.  Eliza is strong and brave and I think she's ready.  

Preparations

  

 

Surgery is scheduled for one week from today.  There are many things to do in order to be ready, especially since we are traveling a big distance to the hospital and will be staying an extended length of time.  Thankfully we're crossing things off the list every day.  We appreciate all of the concern, well wishes, and offers to help.  It makes this whole process so much easier to have such a great support system.

The Next Phase

 

 

It's been more than a year since I've posted an official update.  Eliza is now a sophomore in high school.  She's busy with school, choir, piano, church, musical, and her friends.  As you can see from the shoes in this picture, Eliza has come so far.  These aren't great shoes for her to wear, but the fact that she can put them on and walk is amazing.  Even last year this couldn't happen.  Though she has some challenges with her left leg and foot still, they are relatively minor and it doesn't stop her from participating in most activities.

Chronic pain is still part of her life, but thankfully it isn't as debilitating as it was before her surgery.  Now the pain seems to be focused mainly in her knees.  As I mentioned in the last blog post a year ago, Dr. Novacheck recommends additional surgery to re-align her femurs.  This surgery (bi-lateral femoral de-rotation osteotomy) will straighten her legs and relieve some of the pressure and pain in her joints, especially her knees.

In a couple of weeks we will travel back to Gillette Children's Specialty Healthcare in St. Paul, MN for surgery.  For Eliza, and the rest of us, it is hard to face.  We know better what we are heading into this time.  The good part is that we trust Eliza will be stronger and have a greater quality of life because of the surgery.  Benefits will be life long as having her legs in better alignment will hopefully prevent joint deterioration that she is at risk of currently. 

After spending most of a week in hospital, we will move Eliza to an extended stay hotel for the first few weeks of recovery.  Since she won't be able to bear weight on either leg, she will need full handicap accessibility and, after our experience with her previous surgery, we know waiting to travel will be easier on her (and us!).  We are so grateful to my parents for making the trip with us, and staying with us in St. Paul.  That will allow Dan to return to Traverse City for work once Eliza is settled.

The next couple of weeks will be full of preparation.  Watch for more updates as we travel.