Sometimes you just have to be a pushy bitch...

There are doctors and there are specialists. Then there are specialized specialists. For example, we have a general pediatrician.  I also know of several local orthopedists. But then there are pediatric orthopedic surgeons and thats who Brodie needs to see to get the right medical treatment for his condition.

There are less than a handful of pediatric orthopedic surgeons in this whole state. A handful of surgeons to treat more then a thousand children who need them. Children with club feet, or spinal problems, or bone fractures. So these surgeons are booked months in advance. It can be very hard to get appointment with one.

It's even harder when you live in a rural area. Most of these surgeons work in Phoenix, more than three hours away from where we live. When our baby can't tolerate sitting in a car seat for more than 5 minutes, Phoenix feels as far away as mars.

So our best option is a children's orthopedic clinic closer by in Flagstaff. This clinic involves the surgeon visiting Flagstaff maybe once a month. On that clinic day, the surgeon sees hundreds of children from all over northern Arizona and even parts of Utah and New Mexico. So this clinic is also booked months in advance.

All the children who come to this clinic are funneled through a single harried over-worked case worker.  For weeks I have been working with this case worker, wading my way through paperwork, insurance approvals, and referrals to try and get an appointment for one of these clinics.

I have been very polite and sweet to the people I have been trying to work with, bored receptionists and apathetic medical assistants, only to get brushed off and stalled. They tell me that the only possible appointments I can get with the specialist, or with the clinic, is in early December or late November, months away.

Meanwhile, Brodie's bad leg has been having terrible muscle spasms, where the whole leg gets rock hard and starts to shake. One time, when we were changing his diaper, his good leg actually popped out of joint and popped back in like nothing even happened.

So an appointment months away means months of Brodie of having pain. Months where he is losing valuable treatment and therapy time, when his bones are still malleable and soft, maybe even repairable. Months that could cost him mobility later on in his life.

Yet the very busy case worker and the over-worked medical assistants just keep on telling me to call them the next week because there is not much they can do.

Finally, I reached a point of overwhelming frustration, where I didnt  know where else to turn. I shared my feelings of helplessness with my husband. My husband can be very determined when he wants to be. "I am going to harass the hell out of these people until we get a better appointment." he tells me.

The next day my husband calls me at work. " I got appointments for this month with two different pediatric orthopedists." he says. One of which who has particular hard to get an appointment with. "How did you manage to get that?" I asked him.
"I wouldn't get off the phone with his medical assistant until she gave it too me. I am not above pleading and begging, or even getting a little tearful. I would have cried if I had needed to. Nobody wants to hear a grown man cry."

A good friend told me "Stop being nice about it and start getting loud. You are not in this to make new friends or have people think you are polite. You are in this to get medical treatment for your child.  Do not take no for an answer. Sometimes you just have to be a pushy bitch."

So I took my cue from my husband and my friend and I showed up at the office of the orthopedic clinic and asked to see the case worker. "Well he is really busy." the receptionist tells me.   "That's OK,I can wait."
Then I cornered him in the hallway. He tells me "Well maybe I might be able to get him an appointment with the clinic this coming Monday. But its a long shot."
That's when I got a little irate and I told him that I have no problem showing up at his office every day with a screaming baby until we get a better answer than that.
His eyes got wide and he asked me "you would actually do that?" 
You betcha. I will stalk you. I am not going to go away until you figure something out.
His attitude changed quickly. Finally he relented and said "I will definitely get you into the clinic on Monday."
Damn right you will.

Then I called the absentee medical assistant who never calls me back and has been lagging on pushing through the referrals Brodie needs to go see these doctors. I left her a tersely worded message that basically said 'hey, if you don't get this done today, I will call you non-stop and I will physically show up in your office until you do.'
An hour later she called me back. I'm not her favorite person now, but I don't care. She got the referrals done by the next day.

So folks, that's how Brodie got his appointments moved from two months away to this Monday instead. Sometimes to get it done you just have to be a pushy bitch.

Learning to expect the unexpected

I think pregnant women do a lot of daydreaming.  I know I did.  I wondered over what my new baby would look like.  Would he look like me or his daddy? What color would his eyes and his hair be?  I imagined his personality. Would he be funny and smart? Easygoing or high strung?  I have to confess, during my early pregnancy, I had really hoped for a girl. I pictured a little princess who I would adorn in pink tutus and ribbons and take to ballet class.  But when I found out the baby would be a boy, I wasn't too disappointed.  My husband and son had really hoped for another boy and they were very excited.

So what happens when you discover something that throws a kink into all of your baby plans and changes all of those daydreams?

It started for me one day at work when I was about 21 weeks pregnant.  I had been feeling a little sicker than normal all morning, when I began to feel contractions.  I had some pre-term labor in my first pregnancy, so I was really worried about it and I left work early to go get checked out.  My doctor was also worried and put me on bed rest while ordering a bunch of tests. One of those test was for my regular 20 week obstetric ultrasound.

 I went and had the ultrasound done and as far as I knew everything had gone just fine. At my next doctor's appointment, I even asked the doctor if the baby had looked healthy in the ultrasound.  "He looks good" the doctor told me, but he said he was still worried about the contractions and he wanted me to go see a perinatologist (a specialist in high risk pregnancies) down in Phoenix. Phoenix is three hours away from where we live, so my husband and I decided to take our son with us, stay at my mom's house down there for a few days, and make a little mini-vacation out of it.

A week later, down in Phoenix, my husband and I walked hand in hand into the perinatologist's office.  The medical tech came and got us from the waiting room and walked us into a dark ultrasound room with large monitors on the wall.  Surprised, I asked "oh you need to do an ultrasound of my cervix?".  "Well actually I need to do a full ultrasound of the baby." the tech told us.  I thought it was a little weird because I had just had a full ultrasound only a week ago.  But I figured that maybe the perinatologist was really detailed and wanted his own ultrasound done for his records.

The tech was taking forever.  I watched the clock and she spent over an hour scanning my belly.  At one point, she kept poking and pushing at one particular spot on my belly with the scanner for more than 15 minutes.  She even had me move into different positions.  "What are you trying to look at?" I asked her.  "Oh, I'm trying to get a better picture of the baby's right hand.", she said,  "he has tucked in behind his head and I can't get a good look at it."  I started to feel a slow sense of dread. Why was she putting so much time and effort into this ultrasound?  Didn't they already have one in their records? 

The tech finally stopped scanning my belly and told me she needed to do a vaginal ultrasound.  She left the room for a moment so I could undress from the waist down.  When she left, I turned to my husband and told him "I think something is wrong with the baby.".  He shook his head and gave me a look of exasperated disbelief. "No, of course not. Our doctor would have said something about it already."  He must be right, I thought, we would have heard something about it by now.  I am just being paranoid.

The tech came back in and started with the vaginal ultrasound. As many women out there know, vaginal ultrasounds are not comfortable.  They push a scanner that is shaped like a very large rod up into your most private spot.  This is what the tech was doing to me when the door to the room flew open and a strange man came rushing in.  Startled and embarrassed, as all of my junk was hanging out and facing the door, I jumped up in alarm.  The man quickly introduced himself as the perinatiologist and told me to lay back down and relax.

"Me and several of the other doctors were in the other room watching the ultrasound on our monitors." he says "And we are seeing some problems with the baby."  Let me just say that this is not something you want to hear come out of a doctor's mouth.  My heart dropped and I was filled with something like terror at what he would say next. I reached over to my husband and gripped his hand, squeezing it so hard my knuckles turned white. I asked the perinatologist "can I put my clothes back on and sit up before we talk about this?"  "No," he told me, "We still need to finish the ultrasound so go ahead and lay back while we talk." 

 He started to pull up fuzzy black and white pictures of my baby one by one, describing the limb deformities that they had seen.  First the baby's hand, then his right femur, then both of his feet.   Every time he pulled up a new picture to talk about a different problem, I would think 'oh God, there's more?'. There should be some sort of divine natural limit to how many things are wrong with a baby. Maybe one or two things, but that's it. That's all a parent or a child should ever have to face.

My husband was pale and his eyes were numb.  His face looked like stone.  I started sobbing, crying so hard I was almost hysterical. I managed to squeak out that my father had "lobster-claw" syndrome in a high pitched broken voice . In contrast, the perinatologist seemed almost excited to be diagnosing a fetus with such a rare condition as ectrodactyly. He talked and talked about it, asking us endless questions about my family's medical history, while we just sat there in stunned silence. Then he asked us if we had any questions for him, but at that point I couldn't even think or speak anymore. All I could do was cry.  "I'm sorry to have to be the one to give you this news. That you had to find this out from a stranger." he said before he left the room.  Yeah mister, me too.

After the perinatologist left, I  got dressed slowly, my sobs ringing out in the empty room. My husband stood in front of the monitors, looking up at all of those still little pictures of the baby. The gray light shined on his face and his expression was unreadable. We slowly drove back to my mom's house, the car unnaturally quiet. "I just want to go home." my husband told me as we pulled into the driveway and I agreed. So we packed our things right away and drove the three hour trip back home in a hurry, completely shell-shocked.

That is how I first heard the news that my baby would be severely physically handicapped. Out of the blue, half naked on a cold ultrasound table, a hundred miles away from home, and from a complete stranger.

Friends and family asked me "why didn't your doctor say something to you about it before you saw the perinatologist?"  I have to admit that for a few weeks I was furious with my OB doctor. A little warning would have been nice. At my next appointment with him, he asked me "how did the visit with the perinatologist go?"  "It was a fucking nightmare. That's how it went." I told him. Then I explained to him what the perinatologist had said about the baby's limb deformities. He looked totally surprised as he began flipping through his chart, scanning the notes in a rush. He acted just as shocked by the news as we were. I'm sorry, but I don't believe that he didn't know about it before then.  He is a sharp guy and a very thorough experienced doctor.  He must have wrote about it in his notes or said something to the perinatologist. Otherwise, how would the perinatologist have even known to look for it in the first place?

However, I can understand why he didn't say something about it to us first. As a nurse, I know that, in general, the medical community loathes giving bad news. We see the cat scan that says our patient is filled with cancer before the doctor does. We know that a patient is too sick to leave the hospital alive before that patient's family does. But it's not our job to say anything. The doctor or the specialist will have to tell them, because we definitely don't want to be the one to deliver that message. It's someone elses job, not ours  Maybe my doctor just didn't have the heart to tell us about our baby. It was probably easier not to say anything and let the perinatologist do it.

Well, that's it.  That's the story about how we learned to expect the unexpected. Coping with it, however, was a completely different matter.  Something  I will have to tell about in a different post.