Surviving the Spica: No Spica Needed!

Last Saturday, Katie and I met Chris' parents in Nashville to pick David up.  He had been with them overnight for his special birthday weekend.  Katie was all over the playground with her brace on.

It made me sort of sad while we were there to think that she was likely going to have to wear this huge, cumbersome brace for the indefinite future.

It didn't stop her from doing much, but it's certainly a pain.  And let's be honest - it is exceptionally obvious, and for a child who already has a disability with physical features that people think are different, we've got enough different going on; we don't need a brace too.  Katie, however, really didn't seem to care about the brace.  She hates wearing it, takes it off and hides it, yells when it's time to put it on, and slaps it on her leg, but she tolerates it.

Tuesday we went to the hospital for her tubes and her sedated hip exam.  We spent a lot of time waiting in the surgical waiting room.  (Like, three hours a lot of time waiting.)

She was such a good girl, and she entertained most of the people in there as she pushed a shopping cart around, and around, and around, and around the room waiving to people and telling them goodbye.  Seven people in that waiting room told me they loved her hair, which cracked me up.  It's not some unique haircut!

I cracked up when I saw this on her pre-op intake information.  "Down's facies".  I guess that could be offensive to some people, but according to the dictionary "facies" means "a facial expression characteristic of a pathological condition."  It sounds like a word Jack would use.

Once we got moved back to the pre-op section, Katie knew what was up.  And her patience went out the window.  We had to wait a little longer than normal, because her ENT doctor wasn't actually in surgery that day; he was seeing patients.  We knew that, and I'm so appreciative that he was willing to run over to do her tubes so she didn't have to be anesthetized on a different occasion for it.  We have the best doctors!

Some children snuggle with a stuffed animal . . . Katie snuggles with an iPad.
With a monogrammed cover.

Her exam by her orthopedic doctor was quick.  Chris and I were STARVING by the time they finally took her back (no eating or drinking in the waiting room, as none of the children in there can have food or drink) and ran downstairs to the dining area to get something to eat.  As soon as we came back up, they put us in a consult room to wait for her doctor.  He had a big smile on his face when he came in and said he had good news and bad news.  The bad news was that he couldn't get her hip to dislocate, no matter what position or with what force he tried.  It would not come out of the socket.  That's also great news!  Based on her symptoms when she "dislocates" and the fact that he couldn't get it to dislocate at all, he is quite confident that she doesn't, in fact, have hip dysplasia.  That's the best news we could have gotten.  Hip issues for people with Down syndrome are life long problems.  

He now believes that she has iliotibial band syndrome.  Essentially what is happening is that the iliotibial band (the huge band of muscle that runs down your thigh) is getting hooked on part of her hip, and it gets stuck.  When that happens, her leg is stuck in the same position it would be if it were to dislocate.  He said that the symptoms are essentially identical.  It is excruciatingly painful, the leg is locked in one position, and you hear a pop when the muscle releases (as you do with a hip dislocation when it pops back in).  All of that describes what has happened to Katie.

It's an injury that a lot of runners get, but it can also be caused by:  flat feet, supination of the feet, excessive lower leg rotation from pronation of the foot, bowed legs, weak hip abductor muscles, and a weak multifidus muscle.  (You may note, all of those causes are also issues for people with Down syndrome, including Lady K.)  This is a much better problem for her to have than hip dysplasia.  This can be repaired with a surgical procedure, which is far less invasive than the osteotomy we were anticipating.

The plan now is to go back to see him in three months.  No brace until then!  YAHOO!  He wants it to happen again.  If/when it does, we are to take pictures and video as much as possible, then get her to an ER and have them x-ray the leg in the "dislocated" position without repositioning her legs so he can be one hundred percent certain that the hip is in the socket when she has this issue.  We are very encouraged and feel good with the results.  And never in my life have I so badly wanted her leg to "dislocate" again!

Surviving the Spica: Change in Plans

Monday Katie and I were back at Vanderbilt for her pre-op CT scan.

We were there from 3:00 p.m. until 6:30 p.m. for a scan that probably took fifteen minutes.  She had to be completely still for it, so she had to be sedated.  Hence the three and a half hour procedure that really took fifteen minutes.

Katie was a trooper!  She didn't cry at all when they put in her IV - she just looked at them and said, "BOO BOO!"  She was more irritated by the cover they put on the IV than anything else.

She couldn't eat anything all day long.  And by all day I mean after 7 a.m.  I would be miserable if that were me, and Katie was completely normal.  I guess maybe four years and eleven months in an orphanage makes you more able to withstand hunger.

So then while we're waiting for her to be taken back the child life specialist brought her a toy to play with . . . it was pretend food.  Uh, she hasn't eaten all day!  She tried to each each thing in that basket.

When we were discharged, the doctor who did the scan told me that I could call her surgeon Wednesday to get the results of the scan.

Wednesday morning at 8:00 I called the doctor and left a message for a nurse to call me back and let me know about the scan.  And then I sort of forgot about it.  My phone rang around noon, and it was Katie's doctor himself calling.  The first thing he asked me was how the brace is working out.  He then proceeded to tell me that the scan didn't show him what he was expecting.  What he planned to do in surgery on the 16th was essentially to reshape her femur and reposition it in her hip socket.  The scan showed him that her bones "look beautiful".  While that sounds great, it means she can't have the surgery that he was planning to do.  You know, the surgery that was going to fix this dislocation issue.

Now?  Now we don't know why her leg is dislocating.  He said since it's not a bone issue, it is a soft tissue issue (say that ten times fast).  He said he was disappointed that this is what he found and that, in her situation, it is the worst case scenario.  Not what I wanted him to say.  We had a very lengthy conversation and he discussed a lot of possible options, one of which is continuing to wear a brace until her growth plates close and then operating.  Hey!  Her growth plates will likely be open for five more years!  That would not be fun.  At all.  Five years of not fun at all, in fact.  

What's the plan now?  Uh, we don't know.  And I hate that.  With the surgery, we knew it would be a big surgery.  We knew there would be lots of painful days and sleepless nights.  We knew we would have to deal with the spica cast and a long recovery.  We were ready.  We knew that it would likely resolve the issue.  Now?  Now we are back to knowing nothing.  Well, I guess we know slightly more than nothing, as we know that she has hip dysplasia on the left side.  But we sure don't know what to do about it!

Tuesday we will go to the surgical appointment as scheduled.  Her doctor will sedate her, dislocate her leg while she's sedated, and watch with some special camera he has to see what happens when her leg dislocates.  He will determine if she dislocates to the front or back or both, and what her muscles, tendons, and ligaments are doing when her leg dislocates.  And we'll figure out from there what we can do.  She will also still get her tubes placed (in her ears) as scheduled, and I hope that will help with her speech.

Because of her young age and because of her Down syndrome (which means her soft tissue is already far more relaxed than a "normal" person) he did not sound very optimistic that there is a real fix at this stage.  He does believe that when she had her first episode of dislocation that we are aware of (which was in September) she damaged the soft tissue around the ball of the femur in the hip socket.  Because her leg continues to dislocate, that tissue has never healed and just keeps re-injuring.  One thing he mentioned was having her wear the brace to keep the leg relatively immobile and allowing that tissue to heal and scar, which may help to keep her leg in position.  My prediction is that we will leave Tuesday with no more real answers than we have now.  I think he will tell us to wear the brace and come back in six months to re-scan.  

I'm disappointed, and I'm discouraged.  I wanted this to be fixed.  I wanted to get on the road to healing.  I didn't want her to have to endure such a painful process, but I knew it would be worth it in the end.  Is this the end of the world?  Absolutely not.  She could have so many bigger, more challenging things to deal with.  A brace is not going to kill us; it will merely inconvenience us.  If that's what we have to do, we will do it.  It is just disappointing to think we have an answer and find out that we in fact don't.  I'm keeping a very open mind about it and we will roll with whatever our doctor tells us.  I trust him completely, and he is very knowledgeable about the hip and particularly hip dysplasia and children with Down syndrome.  I firmly believe we could not be in better hands.  We'll figure this out for my girl - it must may not be on my timetable, and that's OK!

Surviving the Spica: Bracing Ourselves

 Slowly but surely, we're getting used to the brace.

Please ignore the couch with no slipcover. . . 

Each morning when she wakes up, she immediately says "Boo boo!  Boo boo!"  When she was sleeping without the brace, she would say that also.  I think when sleeping without the brace, the muscles (which are already stretched and loose) holding her femur in the hip socket would relax even more, which caused the head of the femur to slip out of place and become partially dislocated.  When sleeping with the brace, I think it hurts because it's keeping all of her muscles and ligaments where they're supposed to be, not where they are accustomed to being.  As a result, she's stiff and sore because nothing is working like it was before, even though it wasn't working properly.

A sweet friend of mine picked this lap desk up for Katie and decorated it so cute with her name.  I think this will come in handy.

She quickly learned what it was all about and dragged it around with her for the rest of the night.

The doctors said "life as usual" with the brace.  Do you think they meant Duck, Duck, Goose in the trampoline?

I'm pretty sure they didn't mean "lay on your belly and drink water out of the dog's bowl".  Whatever.

And just to give you some indication of her flexibility without the brace . . . Can you suck on your big toe while riding in the car?  

Today she has her sedated CT scan and pre-op appointment.  The worst part about today's appointment will be that she can't eat anything after 7 a.m., and her appointment isn't until FOUR this afternoon!

Eight more days until surgery!  

Surviving the Spica: Frustration!

Oh my little miss hippy chic . . . she couldn't just patiently wait to go to the hospital for her surgery.  We've had to make a few preemptive trips!

The kids are on spring break this week.  On Monday, Katie woke up and wouldn't get out of her bed.  She was crying, saying "boo boo!  boo boo!"  It took me about 45 minutes to get her calmed down.  We gave her some Motrin and settled her on the couch.  She didn't get up all.day.long.  She even had a potty accident (and not pee) on the couch because she wouldn't get up to go to the bathroom and Chris was upstairs with one of the boys.

After work on Monday I stopped and got her several fabulous dresses to wear while she's got her cast.  We have a consignment store here that's pretty hit or miss, and it was obviously a hit day on Monday.  When I came home, she was still on the couch, and she was very restless.  Chris and I decided I would take her to the hospital.  Even though her behavior wasn't as severe as when her hip is dislocated, we knew something was not right.  

I packed little miss and her iPad up, as the hospital is over an hour from our house.  I was surely not bringing her back to our local ER.  They were scared of her because she's a child and because of her Down syndrome, and at this point in the game we're just going right to the hospital where our ortho doctor works.  My dad came along with us, and I'm so glad he did.  It was nice to have some company.

As long as she had her iPad, she was thrilled.  She was the happiest child at the hospital, blowing kisses and winking at everyone.  We had an X-ray, and the leg was reset again by the X-ray tech.  We determined that it was a partial dislocation, essentially where the femur isn't sitting in the correct place in the hip socket but isn't completely out.

Tuesday, no boo boo issues.  She had a completely normal day.  Chris brought Jack and Henry to their baseball practices in the evening and I brought Katie and David to get Katie's hair cut.  Monday she developed a crazy amount of bed head from just one day on the couch.  I'm trying to minimize that as much as possible while she's recovering from her surgery.

Before

After

Wednesday, everyone was asleep when I left for work.  At 8:24 I got a text from Chris that read "Booboo again."  I was beyond frustrated.  I called her doctor's office who told us to bring her on in.  Totally convenient.

Chris brought her to my office, and I left work and brought her to Vanderbilt.  She was fitted for a hip abduction brace, and then she was X-rayed in the brace.

She was not a fan of the brace at first.  It's big, it's bulky, and it's weird.  It's great practice for the cast.  Again, it was a partial dislocation, also called hip subluxation.  She will wear the cast twenty-four hours a day until surgery.  It will should prevent the dislocation and subluxation until then.  Can you imagine if we still had to do this until July?

I piled her up in the stroller and brought her downstairs for some $5.00 ice cream.  

A little Ben & Jerry's makes everyone feel better.

We went to pick up some supplies for post-op.  That did not include this piano, although she loved it.

I also learned quickly that the brace won't fit into a regular shopping cart.  And that I'm going to have amazing biceps when we're done with this process, because she already needs to be carried more.  She has 15-30 degrees of range of motion with her left leg.  That allows her to walk and sit.  Sort of sit.  It does not allow her to go up stairs.  

She did score this guitar, which she played with for hours.  Katie doesn't play with anything for hours, because she really still doesn't understand toys much.  Give her a microphone or a musical instrument though, and it's on!

She quickly realized that she can walk, run, and jump in the brace.  It really didn't slow her down at all, until she got to the stairs.  I anticipated a sleepless night last night, but she didn't wake one time.  She slept in her bed, and we'll see how that goes when she wakes up.  I don't think she's going to be able to sit up by herself from her bed, so I hope she doesn't try to roll out.  We've already gotten her toddler bed back down from the attic and put it in our room so she can start sleeping there again if she needs to.

So that's where we are.  I hope we only have to go to Vanderbilt one more time before her surgery, and that's for her pre-op appointment and CT scan on Monday.  It's incredibly frustrating to have the subluxation happen repeatedly, so I'm very hopeful that the brace will work and we won't have any issues until the 16th.  And thank God that surgery has been moved up to April!!

Surviving the Spica: The Prep Phase

As soon as we found out Katie would need hip surgery and would be in a spica cast, I began doing research.

I had to fast track that research, question forming, insurance calling, and preparing when we found out her surgery date had been moved up three and a half months.

I have found several great blogs written by parents who have had children in spica casts either because of hip dysplasia surgery or a broken femur.  However, the vast majority of those are written by parents who have babies or children who are still in diapers.  Katie is neither, and there is not a whole lot that I'm finding about children who are (and have been) walking already or are already potty trained.  Katie is almost six years old.  I cannot plop her in a wagon with a few baby toys and keep her entertained.  She's also used to be very mobile and active, so to lose all of that mobility will be a challenge.  I'm stocking up on lots of coloring, painting, play-doh, movies, and books.

The vast majority of our Survival of the Spica will be trial and error.  How do you put underpants on a child with one casted leg that doesn't move?  How do you put a nighttime pull-up on her?  How does she sit at the table to eat?  Finish the school year?  Lots of practical questions, with not a lot of real answers yet or things that I can do to plan ahead.

So, I did what I do best in times of stress or worry . . . I cooked.  And I stocked my freezer.

Pioneer Woman cinnamon rolls, one small batch to eat and one huge batch in the freezer.  These taste like donuts, and David said they're the best thing he ever ate.  I skipped the frosting.  Let's be honest - these children don't need frosting on a cinnamon roll.

I made two chickens (one in the crockpot and one that I roasted) and I shredded them both and froze the meat for tacos, salads, tortillas, baked potato toppers, and things like that.

We took some breaks to draw pictures.  David drew the two little guys.  Katie saw what he did and drew the big one, all on her own.

We made zucchini muffins (one batch with chocolate chips, one without).  

I also made pepperoni calzones, cheese calzones, six dozen meatballs, raisin bran muffins, turkey burgers we can just pull out and grill, protein bites, and mini quiches.  I've got a few things on my list still to make, and I think we'll be good!  I'm trying to do as much ahead of time as I can to make our transition easier both while we're at the hospital and when we come home. 

Between now and April 16th when she has her surgery we have a lot going on.  I will obviously be working between now and then, which means I have to pack everything that needs to be done into very few hours when I'm not at work.  Chris and I meet today with her teacher to discuss the rest of this year and how she's going to be able to finish the year out, her transition to next year in Kindergarten, her placement for next year, and her extended year services.  Henry and Jack will each have baseball practice several times a week (but of course not at the same time or in the same place!) and David starts summer swimming.  David's birthday is Thursday, and we're doing a fun little getaway for his birthday.  Easter is Sunday, and I've done NOTHING to prepare for that!  My mother-in-law's birthday is Monday.  Spring break is next week.  Baseball opening day for Henry and Jack is April 8th, which is also the day Katie has her sedated CT scan to get ready for her surgery.  All of the kids have a dentist appointment the next day, and I think Katie will need to have a tooth pulled (because the adult tooth has already grown in behind the baby tooth).  Henry's birthday is the 19th, but we will likely be in the hospital.  I don't want his party to have to be pushed back after his birthday or for him to feel any less special, so we're doing his party the 14th.  Then Katie's surgery is here!  It will FLY by, so I better make the most of my time!

Happy Tuesday!

Fast Forward

Remember that I told you that Katie was having hip surgery and that it's scheduled for July?

Fast forward.

It's now scheduled for April 16th.

I spoke with the nurse at Katie's doctor's office at about 8:30 Friday morning and asked, among other things, if we could be put on a cancellation list and scheduled sooner if there was an opening.

There must have been a very short list, because at about 11:30 the same morning the scheduler called me and said we can do it April 16th.

Yes, please.

That will get us out of the cast at the start of the summer and give us all summer to get her stronger and ready for school.  No starting school late or in a cast.  Maybe not even starting with the wheelchair still.  It gives me much, much less time to get ready, but we'll figure it out!  I'm so glad we can get the process started sooner and get little missy on her road to recovery!

Tuesday Twelve

1.  Surgery.  Since finding out last week that Katie will need surgery to address her Developmental Displaysia of the Hip (DDH), I have become a woman obsessed.  This surgery will be 3-5 days in the hospital, and 4-6 weeks at least in a hip spica cast.

2.  Spica what?  Don't know what a hip spica cast is?  I didn't either.  Thank you google.

Original photo here

3.  Casting.  We anticipate her cast will go around her back and belly and down her left leg.  The left leg/hip must be completely immobile while casted to ensure it heals properly and we don't have to repeat surgery.

4.  Sweating like a little pig.  Did I mention this cast will be on in July?  In Tennessee?  Her summer wardrobe should be very, very small.  Like, naked.

5.  Car seats.  I haven't even let myself go to the recovery process yet with my thinking.  I'm stuck on the immediate things, like how will we get her home from the hospital?  Katie doesn't weigh enough to be in a booster seat yet.  And, quite honestly, even if she did weigh enough it wouldn't be safe enough.  She still needs a five point harness.  I couldn't trust that she wouldn't unbuckle while we're driving, because I just don't think she understands that yet.  

The Britax Hippo is one option for the car.  It's crazy expensive, but I believe it should be covered by our health insurance.  And we're obviously going to have to go places with her while she's in the cast.  This sounds less than appealing to me.

Another option is a harness, but that would require her to lay down in the car and with four car seats we don't really have that vehicular real estate available.  I'm also going to check with the hospital to see if they have a loaner program so we don't have to buy a seat.

6.  Entertainment.  Another huge concern I have is how we will keep her occupied for six weeks in a cast.  I see lots of television and iPad in her summer future, which I don't love.  Any other great ideas for a stationary child with limited range of motion who doesn't like to sit still for 5 minutes?!

7.  Eating.  How about eating?  How exactly does that happen in this cast?!  I'm not sure if she'll be able to sit up, so right now we're planning to use her stroller a lot (which reclines) and just push her up to the table to eat.

8.  Sleeping?  She sleeps upstairs in a double bed right now.  We plan to have her sleep downstairs in our room while she's got the cast.  At first I expect she'll need meds, etc. through the night.  Once she gets more used to the cast and more comfortable with it (does that happen?!) I don't want her to try to get out of bed with the cast on.

9.  Bean bag chairs.  A bean bag seems to be a must have for a spica cast.  The children may all need one, because I see some bean bag envy coming right up if only Lady K gets one.  I'm thinking about making them - that cannot be a difficult or expensive thing to make, no?

10.  Cooking.  I am going to make a plan this weekend for meals that can be prepared ahead and frozen so I have our freezer stocked when we go to the hospital and for the first days/weeks when we come home.  

11.  Work.  I will have to take time off to stay in the hospital with her while Chris is home with the boys, and I will really need to go back to work the week after the surgery.  Obviously if we have issues, etc. with her surgery I will have to figure something out, work partially from home, or something similar, but right now my plan will be to return to work the week after surgery.  She's scheduled for a Tuesday procedure, so I will plan to go back to work the following Monday.  These are the times I wish that I was still a stay at home mom.  I love, love, love my job and the people I work with, but things like this are difficult on my mama heart.  And guilt in about 100 different directions.

12.  These sweet loves.  

Chris will have the bulk of the work because he will be home with three boys and one immobile girl for the majority of the summer.  I am going to start looking now for some camps for the boys, particularly for after the cast is on.  There goes the "raise" we were getting by not paying for Jack's private pre-school after May. . . Chris is an amazing daddy and husband to our family and he take phenomenal care of the kids and the house while I'm at work.  Seriously, how many dads could do that or would be willing to?  But a hot summer with a spica cast girl and three rowdy boys will be tough.  

David and Henry will be worried about Katie but I think will be big helpers.  But I don't want them to think they have to be.  Nor do I want them to spend the summer inside on the computer or playing video games.  Must. Find. Camps.

My sweet Jack Jack. . . he gets loud and even more wild (if you can imagine) when he's worried about something or feels like he's being left out.  He's still struggling a bit in his own way with the changes to our family since Katie came home.  We will need to be extra sure to make some special one on one time for him during the summer I think so he knows he's still special.  Even if he is a little loud time bomb waiting to happen.

Happy Tuesday!