Katie's Surgery - Day Two

I'm not going to lie to you.  Day two started out rough. . . All of her really awesome strong pain meds and anesthesia wore off around 2 a.m.  She had slept pretty much all day yesterday, so when she woke up at 2 she was up for the day.  I had gotten up at 3:15 to get ready for her surgery that day, as we had to be at the hospital at 5:30.  I did not love getting up at 2!  I put in a movie for her and sort of dozed on the couch until about 4.  Hospitals are not places for getting rest.  

You can see here how high up her cast comes.  Obviously that causes her not to be able to bend her torso at all, so no sitting up, turning, etc.

One bonus with the cast?  I can prop her ipad up and she's good to go!

She's still on IV fluids and a pulse ox monitor.  She's done great with that this time, and it usually drives her crazy.

We rolled her to her belly this morning, which she did not love.  It's all pretty scary to her right now.  It's important for us to move her so she doesn't get pressure sores, and also right now to keep the stuff in her lungs moving because she can't sit up to cough it out.

She did eat some breakfast. . . her beloved hot dog and a little bit of eggs.  

We petaled her cast with some water proof tape to help keep moisture from going to the bathroom out of the cast.  The last thing we want is a wet cast.  There was also a spot at the bottom of her cast, right near her bum, that was pretty rough and was down too low.  Someone from casting came up and trimmed it.  With a saw.  She was not excited about that, but he was so quick and so nice to her.  He did a great, great job.  He told her the noise would sound like a vacuum.  He clearly needs a new vacuum if that's what his sounds like!

I brought a bag of new treats for her.  She opened one after the cast trimming, and it was this little set of dress up bears.  I seriously almost cried when she dressed this first one.  She has a washcloth on her head and a thermometer coming out of her mouth.  She pointed to her and said, "Kk," and frowned.  It made me so sad!  She also had her catheter removed this morning, which made her very nervous.  She was really upset after the turning and the petaling and the catheter and the saw.  We gave her some valium and some pain meds and she took a little nap.

We also had visits from a woman who taught us all about her cast care, caring for Katie in the cast, things we should and shouldn't do, etc.  A woman from PT also came by to fit Katie for her harness for the car and to teach us how to use it.  Because her cast is reclined, she cannot ride in her carseat.  Or any carseat.  She will need to be lying down in the backseat of the car, wearing her harness, and strapped into two seatbelts.  This is how she will travel every.single.time. we have to go someplace.  We are going to have to rethink our school transportation for the boys, because right now Chris brings them and picks them up.  I'm not sure how feasible that will be with the cast, because it will literally probably take 30 minutes to get her in and out of the car each time she goes someplace.  We've got a big learning curve here.

This afternoon, a volunteer came by with some art supplies.  Katie picked some watercolor paints to use.  She loved it.  

She painted lots of pictures.  The girl had to get more paper three times.

She took it very seriously!  She also wanted Chris and me to both paint with her, and she was very selective about the colors we would use.  She may or may not be a little bossy.

We hung her paintings on her door and the walls of her room.  When people come in, she makes sure she shows everyone her artwork.

She was very, very happy when Chris got her collection of movies from the car.  A little Spongebob goes a long way with this girl!

The best part of her day was seeing Gigi!  She and Gigi ate dinner together, and Katie ate all of her hot dog and all of her macaroni and cheese.  She also drank a full cup of apple juice, which was the most she'd had to drink all day.  Gigi brought her a bag of treats, and we did some pop beads and watched a movie together.

She also got a visit from Mabel, a therapy dog.  Mabel was a Great Dane, and she was so big and sweet.  She was really excited that Katie smelled like a hot dog!  Mabel was like a pony - she was enormous!  Her owner was very sweet and friendly, and Katie really liked seeing her.  

If all stays the same, Katie should go home tomorrow.  I think they would have let us go today, but I told them I didn't feel like we were ready.  We're both going to try to get some good rest tonight and look forward to sleeping in our own beds!

Thank you so much to everyone who has been checking on her, praying for her, sending her sweet messages, and sending me texts to see how she's doing.  We are very lucky to have so many people who love Katie and care so much about her.

Katie's Surgery Day

Our sweet Lady K had her hip surgery today.  We originally planned for a combined femoral and pelvic osteotomy.  We were also supposed to have her eye doctor come in and clean out her tear ducts and possibly stent them.  Why?  Because this is what we had going on for about two weeks. . . 

It started as a sinus infection.

Then moved on to conjunctivitis.  And a sinus infection.

Then that little face had nowhere for all of her infection to go, and her tear ducts don't drain properly.  Because of that, she had bacteria back up in her tear ducts.  

Five days after her first round of antibiotics, we were back to looking like a prize fighter.

We knocked that infection out again, and had big plans to fix the tear ducts today.

Womp, womp, womp.  No go on the eyes.  Our hip surgeon didn't feel comfortable with the tear ducts being flushed, as it could introduce bacteria into the bloodstream.  That would be no bueno, since the hip doctor was also adding foreign material, in the form of a plate and some huge screws, into her body.  And, you know, cutting her bone.  There's obviously a risk of infection with those little details, so we nixed the eye procedure for today.  And we were totally OK with that.  I'd rather deal with some drippy eyes than a bone infection any day of the week.

She went back to surgery like a champ, happily playing on one of the doctor's phones.  She waved goodbye and gave us kisses.  She did so well, it made it so much easier to hand her over.  Her ortho portion of the surgery lasted from 7:20 this morning until about 1:30 this afternoon.  I thought it would feel like it lasted forever, but it really wasn't a bad wait.  The nurse was great about updating us just about every hour.

When the doctor got into the operating room and Katie was sedated, he did a range of motion test and took lots of pictures and videos.  He'll compare that to the pictures and videos he'll take when she goes back to the OR for her cast removal.  On her left side, she had about 180 degrees of range of motion.  A typical person has 90 degress - 45 to the left and 45 to the right.  Her doctor was able to turn her left leg so that her foot was pointing at her head and her knee was pointing at where her foot should be, without dislocating her leg.  While that sounds impressive, it's not great.  It can cause big problems down the road, as she gets bigger and weighs more.  The bone makeup and ligament laxity on the right side is the same, so he's not really sure why she doesn't dislocate on that side, but he thinks it just has to do with the positions she likes to sit in, sleep in, etc.  He was able to adjust the position of the head of her femur and to place it in a better spot in the hip capsule so he's confident that it will be much more difficult to dislocate.  He obviously cannot promise us that it won't happen or that she won't have to have the surgery again.  He did not adjust the pelvis at all today.  He said that, if we have to do a pelvic osteotomy, we can wait until she's about 10 or 11 and has grown some more.  Because she's so little, to do the pelvic portion now he would have to cut a lot more than when she's bigger and her growth plate is open more.  I hate the thought of having to do this again, but we trust our doctor and are comfortable with that if he thinks that's what's best for her.

She's in a spica cast from her mid chest (literally right at her nipples) to her ankle on the left leg.  It's a reclined cast, meaning she cannot sit up at all.  Her leg is in a bent position and out to the side at about a 25 degree angle.  This will certainly make things like riding in the car, going to the bathroom. . . um, ok really everything, interesting.  Her doctor is hopeful that we can stretch this cast out for eight weeks, then go into the OR to check healing and move directly into a brace.  Originally he thought we'd do 12 weeks in the cast with a change at 6 weeks, so we're cautiously optimistic that 8 weeks will be enough.  That puppy is going to smell in 8 weeks.  It's a gortex lined cast, and it's got a big opening for potty business.  We will very likely have to do a diaper stuffed inside the cast and something over it to hold it all in, because she obviously can't get herself to the potty independently, and the last thing we want is a bunch of urine in the cast.  

After her orthopedic doctor finished, her ENT doctor checked out her ears and did an endoscopy to check for obstructions that could still be causing sleep apnea.  She's had two sleep studies.  The first was in August of 2012, and it was horrendous.  She had her tonsils and adenoids out in November 2012 and we hoped that would help.  It didn't really.  She had another sleep study about three months later, and the results were marginally improved, but still not great.  Today her ENT discovered that she has inflammation of her nasal passage, which causes swelling and narrows the area for air to flow through.  She's also got a "floppy palate" and a very wide tongue base.  As she sleeps and relaxes, her tongue slips back in her throat, obstructing her airway more.  At this point, he feels like a surgical repair is necessary.  She will have another sleep study so we can collect that data, but he's pretty certain that this is the best route.  It's not pretty.  He'd like to do a turbinate reduction, a uvulopalatoplasty, and a partial glossectomy to remove part of that tongue tissue.  Those can all be done at the same time, and he said recovery is about the same as with tonsillectomy.  We will revisit that surgery in the summer.  Until then, she will be on two daily nasal prescriptions to help with the inflammation and hopefully open that airway up a little bit.  

So for now, she's resting comfortably.  She's off of all oxygen and breathing room air.  She's been knocking on the cast a little when she's awake, and she's been unhappy about it, but not crazy.  I think tomorrow, as she's awake and aware more, has her catheter removed, and things like that will be harder.  This is, again, another time when I'm so, so thankful she's got a mama and a daddy to love her and help her through this.  

Surviving the Spica: What's Cooking?

Remember last year when we found out Katie needed surgery to correct her hip dysplasia?  Then her surgery got pushed up three and a half months?  Then her surgery got canceled?  Oh well it's back on.  We're currently scheduled for late March, but hopefully will get bumped up again on the cancellation list.  Sooo....That means I'm cooking.

I went today and got lots of foil, foil pans, freezer bags, and muffin liners.

I'm also pretty sure that this fridge in our laundry room has never been so full.  

Seriously?  I don't think I could cram one more can in there.

I have lots and lots of goodies on my list to make.  I'll share all of the recipes with you after I get cooking tomorrow.

Also on my surgery prep to-do list?  Making Katie some cute hospital gowns to wear, a few new pillowcases, and some of each of those goodies to donate to other children in the hospital.  She might as well look cute while she's laying there!

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!!