Wednesday, March 26, 2014

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 Birthday Present

Katie will turn seven in June.  When she first came home, she had no idea how to play.  Like, as in, would look at a toy if you gave it to her and just smile.  She had no idea what to do with them.  She didn't know how to pretend to do anything.  Now she loves to cook things up in her kitchen, have a tea party, push some dolls around in a stroller, and do lots of other pretend play.  What does a girl who has a newfound love for playing need?  A playhouse!

I know, I know.  It looks like a shed.  Um, it is.  Use your imagination.

I have big plans for this little beauty!  We're going to make the door into a dutch door, add some windows to the house, some window boxes with flowers, and add a little porch.

It's 8x10, and right now it's divided into two rooms.

I'm not sure if we'll leave it as two rooms or just open it up and make it one big room.

I've been pinning like a madwoman on Pinterest.  Some of my favorite ideas are these:

I love this little porch with no roof.

We will paint the door this color to match our house.  And it's a dutch door!

I want to hang some solar lights on either side of the front door.

I love these little kitchens.  We have a Pottery Barn Kids kitchen that our friends gave us, and we'll move that out.  I want to hang some open shelves above it.

I've already started scouring Goodwill and can't wait for some yard sales to start up so I can find lots of goodies for it.  

I'm going to make one of these drying racks from a wooden tray table.  I think it's the cutest thing!

I plan to make a few of these big pillows to sit on and hang out.

I love these painted floors!  I think I'll paint the entire inside of the house white, then stripe the floor with some of the paint we've got from when we painted her room.  It's seaglass, and I love the color.  I would also love to build a little "built in" bookcase between two of the studs.  Thank goodness Chris is handy!

I promise you that I'm more excited about this project than my husband, and I will probably like the finished project more than Katie!  I think that she and Jack will have a lot of fun with it though, and probably the big boys too!

Tuesday, March 25, 2014

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.