Don't Poke the Bear

I often write with a lot of positivity, hope and optimism.  But sometimes this journey isn't so positive, hope can be hard to hold on to, and optimism is unrealistic.  I really believe in keeping it real, and there have been a significant number of REAL moments lately.  The kind that frustrate, the kind that break you, the kind that make you question everything.  Consider this a REAL special needs mama post.

I've been told I have the patience of Job; I have a lot of patience with Jayson, this medical journey, incompetent people, etc etc.  To be honest, you almost have to have a ridiculous amount of patience in order to stay sane in this special needs life.  Doctors offices, medical billing offices and home health are some of my most frequent numbers called on my phone.  As anyone with experience with these entities knows, very little gets done in ONE phone call with a happy, perky tone of voice.  The same is true for doctor appointments.  I feel like sometimes little can get done until Mama Bear starts to growl.  Well, this mama's teeth are showing...

We had a WONDERFUL visit with our new neuro ophthalmologist two weeks ago.  She gave me hope and comfort that we were going to figure this out and get J's pain under control.  I'm so grateful for that, but the hope and optimism wears away quickly after another few days of seeing your child in pain all day every day.  Answers can't come soon enough.  I don't have much patience when it comes to J's suffering.  I was very glad that J's ophthalmology appointment was shortly after this neuro ophthalmology appointment since Dr. D (our neuro ophthalmologist) was waiting on Dr. J's (our ophthalmologist) examination and thoughts to decide exactly what to do.

The good news is that Dr. J is FABULOUS with Jayson.  He has a way of getting my very challenging child to cooperate with a very challenging examination.  He felt he got such a great look at his optic nerves in the appointment, and that we don't need to put Jayson under anesthesia, which I'm thrilled about!  What doesn't sit well with me is when a doctor questions me and my perceptions as J's mother.  What makes me growl is when a doctor questions my son and his ability to communicate his pain.  We have worked so damn hard for so damn long to get to this point where Jayson can communicate some things with us.  Among these things, the most important to me is J's ability to communicate his pain.  I don't take kindly to doctors discrediting that or questioning his ability to communicate.  NOT. AT. ALL.  I also don't take kindly to doctors questioning other doctors in front of me, without conversing with them.  J's examination showed no optic nerve swelling.  FABULOUS news.  This typically rules out intracranial pressure.  TYPICALLY.  But when has my child every been typical? When I asked Dr. J what would explain the fluid investing the optic nerves bilaterally, he responded that there is no way there is fluid behind in the nerves.  He said the radiologist must have over reached or misinterpreted the images to appease the mother who is voicing complaints of eye pain.

Oh no he didn't.
He did NOT just say that a radiologist overreached to appease ME and my complaint of eye pain.
Holy. freaking. crap.

This doctor has NOT read the MRI report.  This doctor has NOT reviewed the MRI images.  This doctor is NOT trained to interpret MRI images.  Yet, he had the audacity to state that this very skilled radiologist must have over reached or misinterpreted the findings... and to appease ME!  I informed him that the neurologist only listed head pain as the reason for imaging, not eye pain. The radiologist had no idea Jayson had been experiencing eye pain.  Dr. J stated that there must be some mistake because if there is fluid on the nerve there is almost always intracranial pressure, and if there is intracranial pressure there is almost always swollen optic nerves, and J's nerves were not swollen.  I informed him that Jayson is NOT typical, and he tends to be part of the small percentage that is the exception.  Dr. J is not typically our ophthalmologist.  This is the second time we have seen him since ours has been out on maternity leave and has a long wait list to be seen.  So I reminded him of Jayson's past, that he has had long-term severe intracranial pressure with completely normal eye exams without swollen optic nerves.  I reminded him my son had to have a cranial expansion surgery to relieve the pressure and that parts of his skull were completely worn away from the pressure inside his head YET his eyes looked fine.  You're not going to like what he said next.

"How do we KNOW he had pressure?  Did he have a lumbar puncture?  Did he have intracranial pressure monitoring?  No, he didn't. We don't know for certain that he had pressure since these tests were not done."

WOW.  Just wow.  Apparently imaging, symptoms, my son's skull being worn away and my doctors cutting open his skull and expanding it were not enough evidence for him.

I honestly could not believe this doctor appointment that was supposed to give us answers had taken such a bad turn.  I could not believe that a doctor who could work so well with J could struggle so much to listen to me, his mother, and trust in Jayson's other doctors.

I don't like it, but when I get mad I just start to cry.  I can't help it.  I want to yell.  I want to fight.  But instead I cry.  So I cried.

In tears I told him about J's pain.  I narrated a typical day for Jayson.  Not only does he rub his head a couple of times a minute like Dr. J had clearly observed in clinic, but almost daily he breaks down sobbing from the pain.  My son has had two brain surgeries and two cranial surgeries, without crying.  So he's experiencing pain that pushes him beyond his threshold.  That's noteworthy.  I told him about how J's school has called and had me come get him because he was in too much pain.  I told him about how fed up I was with doctors punting him to another specialist or blaming Jayson's behavior or sensory issues as the culpruit because they were too busy or unwilling to look beyond typical causes for his symptoms.  I told him that I can't continue holding my son, while he sobs and rubs his head, and promise him things are going to get better.  I depend on doctors to keep that promise, and they aren't willing to help ease his pain.  He gave the whole, "I'm a dad too, I can imagine how that might feel speech" and I just shut down.  This is also what I do.  I shut down as a coping mechanism and wait until I'm alone to completely fall apart, cry, scream, and cuss a lot.

Fortunately I made it to the car before I fell apart.  As I was getting Jayson in his car seat he grabbed my hand and put it on his head.  I know, baby.  I know.

I called my bestest friend in the whole wide world on the way home, my sister.  She is often my voice of reason.  She comforts me, toughens me up, encourages me, cries with me and knows me better than anyone.  I honestly didn't expect her to become ever angrier than I was about the whole experience.  But she works with radiologists and knows how highly competent and respected they are.  How dare this doctor discredit what a radiologist saw on J's imaging.  It wasn't opinion.  It wasn't interpretation.  It was something he saw on J's imaging. Fluid is clear on imaging.  It is not easily mistaken.  How dare this doctor criticize a professional radiologist and his findings, particularly when he had not even looked at the images himself.  How dare this doctor discredit our other professionals who have worked with Jayson for years.  My sister validated my frustration and said I needed to make a complaint.  This wasn't okay.  She was tired of this.  I was tired of this.  Why does absolutely everything with Jayson's care have to be a fight???!!!

I came home and wrote most of this blog post to cool down and collect my thoughts. I didn't finish it then, so I didn't post it.  I was interrupted by a phone call... by this doctor.

I was surprised to answer and have Dr. J on the line.  Hadn't he had enough?  I certainly had.  I heard him say, "Hello Mrs. West. It's Dr. J.  I just got off the phone with Dr. D (neuro ophthalmology) and I wanted to give you an update of what she says..."  I closed my eyes and took a deep breath.  I knew what was coming.  More of what he dished out in the clinic.  I was certain he was calling to boast and say Dr. D agreed with him and Jayson is fine, the pain is behavioral, he doesn't have pressure, and the images aren't accurate.  I prepared myself to hear this doctor pat himself on the back and tried to preemptively think how I would respond.

But I was wrong.  Nothing in the world prepared me for what I heard next.

"Dr. D met with a team of radiologists and neuro-radiologists last week.  She cares very much about your son and took the time to coordinate this meeting.  They all spent 30 minutes going over Jayson's imaging, both current and past, and they believe there is a lot of evidence to support that Jayson is experiencing intracranial pressure."

My heart sank.  I felt like it stopped beating, honestly.  And like I had been gut punched.  I wanted to say something, but I couldn't because I felt like that air was knocked out of me.

He continued, "There is a lot of evidence in the imaging over time to believe that Jayson has had pressure in his brain for some time, and it is building.  They think this is causing his pain.  And I was wrong.  They confirmed your statement that Jayson has never had swollen optic nerves even with intracranial pressure.  He is a complex case.  What I failed to relay to you is that swollen nerves is just like one out of maybe ten signs of intracranial pressure.  Jayson has many of the others.  I was wrong to imply that it was the only way to tell if he has pressure."

I knew I had to talk.  I had to find a way to respond.  The pressure in my throat and my chest started to move, but it triggered the tears.  Trying not to sob over the phone I managed to say, "Okay.  This is all information that no parent wants to hear.  But I appreciate the call very much. I appreciate the update and that we are starting to figure this out.  This is a much different outcome than I expected.  So what do we do now?  Is someone supposed to contact me?  Dr. D? Our neurologist?  What do we do now?"

He responded, "This is not my area of expertise.  I do want to do a more thorough exam when he is under anesthesia, which is sounds like should be soon since they plan to do a lumbar puncture to test Jayson's pressures in his brain (spinal tap).  I would suspect either Dr. D or your neurologist should be contacting you in the next day or two.  I'm sorry.  I wish Jayson well and will plan to examine him when he is under anesthesia.  If you don't hear from anyone soon, call me back and I will try and message your docs and facilitate some conversation."

My head was spinning.  I was so full of emotion that I couldn't process it all.  All I could do was sob.

The doctor was wrong, and he admitted it.
My son was not okay like he said.
A team of doctors sat down together to talk about my son.
Jayson likely had intracranial pressure.
Pressure in his brain is likely causing his symptoms.
Pressure usually means brain or cranial surgery.
I still haven't heard from our neurologist since the MRI.
When we he call??
What are our next steps?
How can Jayson possibly endure a spinal tap?
How can Jayson be expected to endure even MORE?

It was all too much.  I crumbled, collapsed, and just cried out every emotion until my body couldn't produce any more tears.  I knew I needed to be strong for Jayson, but not now.  In that moment, I was just broken.