Friday 15 March 2013

Hippy Chic

Last Thursday, I was at a meeting for David's summer swim team.  As I was pulling out of the parking lot, my phone rang.  It was Chris, at home, and I could instantly tell that something was wrong.  He sounded a little big panicked, and I could hear Katie screaming in the background.  He explained that she had fallen in the kitchen while she was playing, and that her leg came out of the socket, at the hip.  This also happened in September.  I told him to meet me at the ER.

I got there about 10 minutes before Chris did and went inside to get her all checked in, with the hope that doing so would speed up the process for us when Katie got there.  When she dislocates her leg, it is excruciatingly painful.  We live in a very, very small town.  The hospital closest to us isn't going to win any awards for the best hospital in the state, but it was the only option at that point.  It didn't get us in any faster.  Katie was in such pain that, while we were waiting in the waiting room, she had diarrhea all over herself and me.  She wouldn't move her leg, she wouldn't let me put her down, and she couldn't get comfortable.  She was wailing and writhing in pain.  It took thirty minutes for them to get us to an exam room.

We were in the exam room for about an hour before we got to go back to X-ray.  They didn't give any pain meds during that time; they were more concerned with interviewing me to make sure I didn't beat her and cause the injury.  I appreciate the process, I really do, but they could have given her some ibuprofen while they determined whether or not I'm an abusive parent.

Finally she was so upset and exhausted she fell asleep.  We still hadn't gotten back to have an X-ray yet and I was seriously kicking myself for not just taking her directly to Nashville.  I honestly don't know how we would have been able to do that though, because she was in such incredible pain.

We finally got back to X-ray, and the tech had to position her legs so that her feet were together and, when doing so, accidentally reset the leg.  Instantly Katie was fine.  She said, "Boo boo gone!  Thank you! Bye!  Mama, hot dog?"  We got two X-rays and sat in the ER exam room for two hours waiting to be discharged.

Two days later, Katie tried out for baseball.  Not a special needs baseball team; the team Jack is on.  There were about one hundred people in that gym.  The kids had to field three balls, throw them to a coach, then run as fast as they could from half court to the end and back.  Katie missed every single ball, chased them all over the gym, and was probably the slowest runner there.  And everyone in that gym clapped and cheered for her like she won the World Series.  I was a soggy, crying mess.  She was so proud of herself, cheering for herself and clapping right along with everyone.  It was a wonderful morning.

That night we got a call from her baseball coach to tell us practice started Tuesday, and she and Jack were ready to go!  She went to her first practice and hung with everyone else for about an hour of the hour and a half practice.  She was the only girl and she did a great job.  She really liked it, and the coaches were fantastic, asking lots of great questions about her and not treating her any differently.

Wednesday Katie and I went to Vanderbilt to follow up with our ENT about her second sleep study and two failed hearing tests.  The sleep study results were wonderful.  She still has a slightly increased rate of apnea, but he was very satisfied with the results.  We will retest annually now until or unless we start to have higher rates of apnea.  He did say he wants to do bilateral tubes and a sedated brainstem response hearing test .  If she fails that test, she will likely need a hearing aid.  I'm really not concerned with that.  If she needs one, she needs one.  I don't foresee that being a big deal at all.

Yesterday we were back to Vanderbilt to meet with an orthopedic doctor about her hip.  We had some time before our appointment, so I took my girl on a Ben & Jerry's date.  She clearly enjoyed herself. . . 

We talked to the doctor and he first had Katie lay down on her belly on the exam table.  He physically manipulated Katie's legs with her in that position so he could see her range of motion on each side.  While he did so, his resident took photos of her legs on the doctor's iPhone.  I was standing by her head to help keep her still, so I couldn't see the legs.  I did hear him say when he manipulated the left leg, "Oh, definitely."  Um, not really what I wanted to hear.  He had a sort of cautious smile on his face when we all sat down.  He showed me the photographs, and there was an immediate difference that even I could see.  Her right leg range of motion looked totally normal as he pushed it up and out.  It didn't go very far with her on her belly.  The left knee, however, was almost at a 90 degree angle and back significantly further toward her head in a very, very unnatural looking position.  That was an obvious indicator to him that her femur does not sit properly inside her hip socket.  She was diagnosed with Developmental Dysplasia of the Hip.  

And there went her baseball dreams.

We had a very lengthy discussion about what can be done to repair this, and surgery is the only option. Prior to twelve months old, there are other bracing options, but not at this point and not with the significance of her situation.  

There are two scenarios we will be looking at:  either a femoral osteotomy or a combined osteotomy.  Essentially, the femoral osteotomy is the best case scenario and only the femur and surrounding muscles, tendons, and ligaments will be repaired.  That is estimated at a 2-3 hour procedure.  The combined osteotomy would involve repairing and reshaping also the hip socket and possibly part of the pelvis as well.  That would be a 4-6 hour procedure.  We won't know until she has a CT scan, but truly won't know until the day of the surgery and he's able to see once he starts what we're dealing with.  Un-repaired, continued dislocation of her leg can cause obvious issues like muscle tears, fracture, arthritis, further damage to the bones, injury to her knee from having to constantly reposition because of her hip issue, and a whole list of other lovely things.  Not repairing is not an option.

Recovery is long.  We will be three to five days in the hospital, then four to six weeks in a cast to keep that leg completely immobile.  The cast will go around her back and belly and down the thigh so her newly reset and repaired femur stays in place in the hip socket and can heal in the right place.  Then she will have months of physical therapy to learn how to use the muscles of her hip and leg when they are in the right place and are not so stretched out.  We are scheduled for surgery in early July.  So yes, four to six weeks in a huge cast in the summer when it's about 100 degrees here.  I would rather do that, however, than when she's in school.  She will be in a new school in the fall, in a full inclusion kindergarten class and I don't want to add a cast to all of that newness.  Nor do I want to wait any longer than we have to for the surgery and July was his first available.

It was definitely not what I wanted to hear.  It was also not a surprise.  Since we got the referral to ortho last week, I've been researching hip dysplasia like crazy, and I knew the only option at this point was surgical.  I obviously couldn't diagnose her myself, but I was prepared mentally and emotionally for it and for surgery as an option.  Is it ideal?  Of course not.  It actually pisses me off.  This is something that could have been repaired in Russia with a brace.  A brace.  Not an invasive surgical procedure with several months of recovery.  The medical information we received when we brought her home had a bunch of inaccurate diagnoses on it like a hole in her heart and an umbilical hernia, but it said nothing about hip dysplasia.  Pediatricians in this country routinely screen infants for "clicking" hips, which is the first indication of dysplasia.  Of course she didn't have that benefit; and if she did, they just ignored it.  I've allowed myself one week to be mad about this.  After that I'm done.  Being mad isn't going to change the situation or make anyone feel better.  But fixing her tiny little hip will!

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