Silence

Have you ever been told bad news that needed follow up and further explanation?  Maybe something like, "Your mom is being transferred to the hospital.  She was in an accident." or "This is the school.  Your child had a fall and needs to be picked up from school.  He/she may need to see a doctor."  or maybe "It doesn't appear there is enough money to keep your job position next year.  It depends on our finances."  It sucks to hear bad news and be in limbo wondering if things are going to be okay or fall apart. We had heard it appears Jayson has pressure in his brain that is causing his severe pain and that he needs a lumbar puncture to test pressures.  As a mom, I had a million follow up questions to this information:

How do we know he has pressure?
What evidence did they find?
If we confirm he has pressure, is it looking like he may need another cranial expansion surgery?
Or will he need a shunt?
Are we certain his Chiari is stable?
Why a lumbar puncture?
Why have we never done one before with his previous concerns for pressure?
Why has ICP bolt monitoring been suggested over a lumbar puncture in the past?
Would bolt monitoring give us more information?
Is it possible he may need both a lumbar puncture and bolt monitoring?
Is there a way to avoid doing both?
How can we keep Jayson calm during and after any of these procedures?
If the imaging suggests a build up of pressure over time, what have we missed in past imaging?
Who is heading this up?
Is it time to get an appointment with neurosurgery?
Is my son's life in danger with high icp?
What is our timeline?
How quickly will we move on this?
Our cranial surgeon took another job across the country.  Who should we see now?

None of these questions can be answered by a single person, besides neurology.  Our neurologist should have an answer to all of these, even if the answer is that we don't know at this time.  None of our other doctors could begin to tackle these.  We were at the mercy of our neurologist and I cannot even put into words the heaviness I felt in my heart knowing it was likely my son had pressure in his brain causing his headaches and there was nothing I could do but WAIT for someone to contact me.

We waited.  And waited.  And waited. After 3-4 days, I sent off another email to our neurologist.  After all, he STILL hadn't responded to my requests for him to call us to discuss Jayson's concerning MRI findings.  He sent in the order and said he would call with results.  That typically happens in 24-48 hours.  It had been weeks.  In the email I updated him on Jayson's pain and let him know that Jayson was still suffering all day every day.  I explained how hard it is to hold him while he cries and promise him Mommy is doing everything she can, when all I can do is wait for him to get back to me with information and a plan.  I said I was also still waiting to go over findings in Jayson's MRI including a new diagnosis.  I cc'd our Comprehensive Care doctor, the queen bee, the magician to makes magical things happen.  Then I waited some more, hoping and praying my phone would ring.

For WEEKS I had taken my phone everywhere with me.  To the bathroom, to the school bus to get Jayson on and off the bus, to his school, to work meetings, to other doctor appointments, to therapy sessions, to church, to social gatherings.  I have carried it in my pocket, arm pit, purse or bra absolutely EVERYWHERE as I hoped and prayed for a phone call from our neurologist.

It never came.

After another couple of days, I got an email response from him.  It didn't answer any of my questions and only made my head spin with more questions.  It was brief, only a couple of sentences and said that he was sorry to hear Jayson was still in pain and he believed Jayson needed a lumbar puncture and he would get one set up.  He said he had NOT yet been in contact with Dr. D our neuro ophthalmologist, despite the fact we had been told they were in contact making a plan together. In response to my question about J's MRI findings, he simply defined Jayson's new condition as a congenital malformation of the brain.  Signed, Dr. L.  That was it.  No answers.  No explanations.  In my opinion, no help whatsoever.  What evidences of pressure are there?  Why does he need the lumbar puncture?  Why a lumbar puncture (LP) over bolt monitoring? In our previous experience with pressure our doctors told us a LP told us very little and bolt monitoring would give us the information we needed about pressures.  And I need a whole lot more information about J's new diagnosis other than it's a brain malformation.  I got more information from Wikipedia!

I was FRUSTRATED.  Of course, I cried.  My whole entire world depended on this man.  My son's very life is in his hands.  Yet he can't call me.  He can't answer my questions.  He can't write more than two sentences.  He can't take the time to connect with me or Mike and let us know what is going on in our son's brain and what their plan is to address it.  We have worked with this man for SIX YEARS.  How can he let us down in our greatest time of need?  We know he's busy, but how can anything be more important than my sweet Jayson???

As I struggled to know what to do, I received an email from Dr. M in Comprehensive Care.  She told us to go ahead and contact neurosurgery.  It was just one sentence, but at least it was something.

So I called neurosurgery.  I had not prepared myself for the experience I was about to have.  I should have known better.  Neurosurgery and I have a LOT of history, and it's never been good.  But I reached out blindly and expected it to go well.  It didn't.

I left a message which was returned the next day.  Their not-so-lovely-at-times nurse called me back and our conversation went a little something like this:

K: Hi Mrs. West.  You're going to have to help me out here because there is a lot I'm not understanding.  You are wanting to schedule an appointment for Jayson, correct?

Me: Yes, our doctors are saying it's time to see NS based on recent MRI findings and evidence of icp.

K:  Okay, well you see, it appears Jayson has not been seen since the summer of 2016.

Me:  Yes, that is correct.  He has been stable until recently.

K:  Okay, well he was supposed to come in the summer of 2017 for a yearly follow up, but you neglected to make that appointment.  Since you neglected the care of your child then, I'm not understanding the urgency for an appointment now.

Me:  (My brain: oh my hell, did she really just say that??!!!)  {in tears}  Oh, well I don't think I knew we were supposed to come in for a follow up.  No one called me.  I didn't receive a post card.  And our care coordinator never brought it to my attention.  You see, I had just had a baby last summer and I was recovering from severe pre-eclampsia.  I was told to keep my summer free of unnecessary appointments and care for myself and my preemie baby.

K: I see, well since you neglected to make that appointment I'm not certain you can see Dr. B.  Besides, this sounds like a cranial issue to me so you should see your cranial doctor, not neurosurgery.

Me:  Well over the summer last year Jayson's headaches came back and we took him to see his cranial doc who only measured his head and said he was fine.  Now we have imaging that says differently and that he had pressure then and now.

K:  Oh, so he was having problems last summer and you still didn't make an appointment.

Me:  We saw his team who said we didn't need to see neurosurgery.  We increased one of his meds and it helped for a couple of months.

K:  Well, I'm not sure how we can help with all of this.  We will probably need another referral and if his pain is managed by medication now, then I don't think he needs to...

Me: (I interrupted her very angrily)  Will you just LISTEN?!  The med only helped for three months. His pain came back in December.

K:  Why didn't you call us then?

Me:  I'll explain if you just LISTEN!  His team thought it was his ears.  He had a bad double ear infection.  It took weeks to get surgery to switch out the clogged tubes.  Then we were told we had to give him time to heal.  The pain persisted so neuro ordered an MRI.  Now the MRI shows pressure.  We've heard conversations are happening behind the scenes but we haven't directly heard from our neuro.  But Comp Care wants us to see Dr. B in neurosurgery.

K:  Okay, well I don't think you can see Dr. B.  But you also see another neuro surgeon Dr. K with his cranial doc.  It sounds like it is his craniosynostosis.

Me:  We don't know that.  How could you know that?  I don't know that because no one has talked to me.

K:  It sounds like you don't really know what is going on.

Me:  No, actually I don't.  That is why we need to see neurosurgery!  And Dr. M said we should make an appointment.

K:  Well, I don't know about that.  I think it's best if I message your doctors and see if they can decide if Jayson needs to be seen and which of his two neurosurgeons he should see.  Does that sound good?

Me:  Yes, I hope they respond soon.

K:  Me too, have a nice day.

My blood was boiling.  But instead of yelling, what did I do?  I cried.  A lot. At work.... in front of a teacher.  Thank goodness we had a relationship and she knows what is going on with my son.  I was embarrassed but I couldn't keep it in.

How is this real life??  How is this okay???  How is this considered GOOD CARE?!  What about Primary's motto "The Child First and Always"?!!  How is this crap happening AGAIN?!?!?!

I was up in arms and felt so helpless.  Neuro wasn't responding.  Comp care was only deferring to neuro and telling us to get in to see Neurosurgery.  Neurosurgery was saying I missed an appointment and my child may not be able to be seen.  I didn't know what to do.  Whenever I have been in this desperate situation I have cried to Dr. M in Comp Care and she makes it okay.  She hasn't helped much yet, but if she knew all that was going on I knew she would help.  She always had.  So instead of writing her another desperate email, I decided to call.  I called and left her a message with her nurse who said she was in meetings all day and would get this message to her ASAP.  Hopefully she would call me soon.  In the meantime I may need to consider taking my son in to the ER to be admitted.  Things would definitely happen then.  I didn't want to expose him to a million of other things, so I just prayed that Dr. M in Comp Care would get back to me soon.

I wish I could end this post stating we got in touch with our neurologist, but we didn't.  I wish I could say that we reached out to neurosurgery and they got us in to see them and we now have answers.  But we didn't.  I wish I could say that once again our Comprehensive Care doctor came to our rescue and helped all involved parties communicate.  But she didn't.  I wish I could say that this experience with Primary's, our doctors, and a crisis was DIFFERENT than our previous experiences, but I can't.  But what I can say is that this frustration triggered so much PTSD it has made it hard to function.  It's like Groundhog Day and I'm reliving a nightmare I can never wake from.  I was stuck.  No where to go, no one to go to.  I knew my son was in constant pain and the cause was likely pressure, which is life threatening, and no one out of our NINETEEN doctors and specialists was stepping up to help us.  This is the kind of stuff you read about or watch on TV.  But I was living it.  AGAIN.  And my son was the one suffering.  It's not okay.  It's never been okay.  Our hospital and doctors can do so much better.  They need to do better.  We HAVE to do better, for Jayson.  He deserves better.