Advocacy

Julie and I have learned some hard lessons these past few weeks about the fact that there is no place for tact or deference when it comes to dealing with health care providers.

A few weeks ago, we learned about Jocelyn's hip dysplasia only because Julie mentioned to the pediatrician, after he had completed all of his tests during the routine 6-month checkup, including a hip exam, that one of Jocelyn's legs was longer than the other and that one butt cheek had a slightly different wrinkle. He took a second look at Julie's insistence and discovered what seemed to be a clicking when her hip was moved a certain way, causing him to order an X-ray that confirmed that one of her hips needed correction.

To say we were disappointed that this was only discovered (by a pediatrician at supposedly one of the finest hospitals in the country) after we pointed out that there seemed to be a problem is a huge understatement. The fact that Jocelyn's condition wasn't caught until after she was six months old greatly limited her treatment options. If it had been caught in any of her previous monthly checkups, at which hip exams were also administered, she might have had the option of being placed in a harness instead of having to undergo surgery - and anesthesia, and stating overnight in the hospital, and a 3/4-body cast.

Then, after we had the surgery performed to correct the condition, we discovered that the casting was done incorrectly (by a supposed world-class surgeon at another of supposedly the best hospitals in the country), causing a pressure sore to build on Jocelyn's backside that threatened to break down the skin. This was after being warned by the surgeon again and again that a pressure sore is one of the biggest risks to being in a cast for 12 weeks, because if the skin breaks down, we would likely have had to take the cast off, hope any infection went away and the skin healed correctly, and then start all over with the operation and 12-week recovery again. If it's such a big risk, wouldn't you think the surgeon would set the cast correctly?!

We ended up in the emergency room yesterday to deal with the pressure sore. The ER doctors decided to try to saw out the indented portion of the cast to relieve the pressure on Jocelyn's skin, and hope that doing so would not cause the hip to fall out of joint. I'm not sure how you think a 7-month old would react to hearing a loud saw and feeling pressure being placed on the backside of their cast, but it wasn't pretty. I have never heard Jocelyn scream like that. She was so frightened, it took us about a half-hour after the sawing was over to soothe her. Another completely unnecessary trauma.

Luckily the cast still seems to be holding the hip in place, so we don't have to repeat the operation.

I also have to point out that the quality of the nursing care we received after the initial surgery was abominable. I will give just a few (of many) examples. After Jocelyn was put in a post-op room to recuperate, the nurse came by quickly and then simply disappeared for hours. Later in the day, another child was wheeled into our room, and almost immediately her family started to complain that the temperature in the room was too high, so the other child's nurse turned the thermostat down to 64 degrees. The curtains separating the two sides of the room were literally flapping in the breeze from the air conditioner. I'm pretty sure a seven-month old recovering from surgery should not be in those conditions, but our nurse wasn't around, so we were the ones who were left to deal with it. What were we supposed to do, confront the other family and tell them to turn the temperature up?

Shortly after, a second nurse came in (the first one simply disappeared after coming in briefly again; Julie and I were left wondering whether she wasn't just a figment of our imaginations) to check Jocelyn's vital signs. We had just gotten her to sleep, which was no small feat given the amount of noise and activity on the other side of the room. We asked that nurse why she needed to check Jocelyn now, given that no one had been by all day to check her while she was awake, and she said, "I prefer to do this while the child is asleep." Well, I'm glad we can suit your preferences! If dealing with awake children is too much trouble for you, then why are you a pediatric nurse?! That just about pushed me over the edge. I went down to the nurse's station to demand that Jocelyn be placed in a warmer, quieter room where she could rest comfortably. Of course, my request was initially received by the supervising nurse as though I had asked that the building be turned upside down. I think they eventually realized that I was not going away until she was moved, and so eventually they wheeled her down the hall to another room.

Julie and I are furious - furious that the pediatrician missed the diagnosis, furious that the surgeon set the cast incorrectly, furious at the quality of nursing care she received while recovering from the surgery, and furious that she has had to endure all of this completely unnecessary physical and emotional trauma. I can only imagine the frustrations of parents who don't have access to this level of supposed "quality" health care. Our hospitals are supposedly the best in the world - I can only imagine what they are like in St. Louis or Topeka!

We feel the only way we can deal with this going forward is to become vocal, pain in the a$% advocates for Jocelyn, to question everything, and to insist, forcefully, that changes be made when we suspect that she is not receiving the finest care possible. It seems to be the only way of ensuring that things are done correctly. It just seems like those who defer to doctors' judgment are bound to disappointed - both in the doctors and themselves - in the end. We are.

The one bright spot in all of this is that Jocelyn continues to amaze us - she acts as though having on a cast with her legs splayed as wide as they can go is the most natural thing in the world. She didn't cry at all during or after the surgery, and they didn't have to give her any pain medication, despite having to cut one of her tendons. Last night, just a little while after the doctors had sawing her cast, she was laughing and smiling at the nurses in the hallway of the ER. Perhaps she can sense the stress and anxiety her parents are going through and has decided she will be the emotional anchor for us all. I wouldn't put it past her. But I still would like for her to not have to see the inside of a hospital for a while.