I NEED YOU ALL... AGAIN

I'm so tired, so frustrated, so confused.  I'm going to vent to my support network of friends, family and other special needs moms here, and ask for some virtual hugs, prayers and any advice you might have.  This started out as a FB post that grew very long, so I've made it into a blog post as well so that it's easier to read.  Here is our current situation:

If you are not familiar with what is going on with Jayson and his pain, please catch up here.

Jayson's pain the past 3 days has noticeably decreased.  I still saw evidence of pain throughout the day, but he was happier, he was active, I had my little Jayson back.  He had slept well a couple of those nights without pain, but we had him on Oxycodone at night.  He had a great day yesterday, so I thought I would delay his Oxy and see how he did, and hopefully not have to give it at all.  Things backfired in a bad way :(  Right at midnight Jayson started stirring in his sleep, jerking in response to pain, and rubbing in between his legs.  I told Mike to grab him some Motrin instead of Oxy because 1. If J gets Oxy while awake or starting to wake up it makes him cray cray 2. I didn't want him in pain, but I was still trying to see if we could get through the night without Oxy and 3. I wanted to video some of his behavior J does which tells me he's in pain to show the doctors, and his behavior looks different on Oxy.  I got the video clips I needed to show J's behavior while in pain, but unfortunately that behavior lasted for about 4.5 hours.  It was heartbreaking.  Jerks, spasms, breath holding, leg grabbing, squirminess, curling in a ball, hand holding in between and under his legs soon escalated into manic behavior, thrashing, grunting, fussing, neurotic laughing, hyperness and seizures.  The positive is that I got video clips throughout the night to show the progression, but the sad thing is it took hours for the Oxy and melatonin to get him to a point where he could sleep.

It clearly took a toll on Little J.  He is having a hard time walking today, he's super jerky, he keeps grabbing under and in between his legs, and he only wants to lay down.  He's taking his SECOND nap for the day at 2:30 PM, and he woke up from his night sleep at 12:15 PM.

I seriously don't know what else to do.  I call the radiology department every single day (usually several times a day) trying to get his spinal MRI bumped up.  Right now it's scheduled for Jan 28th.  They only do "spinal" MRI's on Wed and Fri so that really limits my opportunities to get him in sooner if someone cancels. (Which I think is the dumbest thing ever-- Why is the hospital's motto "The Child First and Always" when clearly putting the child first would be breaking protocol and getting him in for an MRI even if it is NOT on a Wed or Fri).  I called Neurosurgery a couple of times last week to see if there is anything else they think it could be so we can be looking into other things while we are waiting for the MRI.  I called because I was very concerned about my son, and I was literally harassed and insulted by the NS nurse who said I was clearly on a fishing expedition to find something wrong with my child, and said their department has NO evidence that my son is in anything but healthy condition because he hasn't been seen in their office. Um... they were out of the office the whole holiday season when this was happening, and the neurosurgeon on-call at the hospital told us to see our pediatrician for the MRI order and some pain meds.  Then when I called to schedule an appointment with NS, they said I had to wait until after the MRI so I can't see a doc until February!  So this nurse is saying she doesn't believe me that my son is hurting because she hasn't seen him in the office because they won't let me have an appointment to be seen in the office... and J can't be seen in the office until AFTER the MRI that is being delayed in part because their office does not think the MRI is necessary, because he hasn't been seen in the office.  Make sense???!!!

This is the SAME department who neglected my child's long-existing craniosynostosis condition and intracranial pressure which has resulted in permanent brain damage.  Clearly, I unleashed the momma beast on the phone with this neurosurgery nurse.  As a result of me losing my momma cool, we now have a neurosurgery appointment on Tuesday, but I am TERRIFIED of how it will go.  My son is really really struggling here.  I need a doctor on my side.  I need help.  I need answers.  And I'm fearful these things won't happen, and I even am fearful I'll be insulted again and accused of being a crazypants mom.  THAT is why I had to create the video, because I honestly don't know if Jayson will show he is in pain in that office-- and sometimes he shows pain in a manic way by shrieking and giggling.  Doctors don't know my son, especially this new doc.  And yes, this is a new neurosurgeon since the neurosurgeon we've had for the past two years dismissed himself from Jayson's care once we discovered Jayson's new cranio condition that he missed for two years.  And NO, this new neurosurgeon does NOT work with Chiari.  So we currently are without a Chiari specialist, and these problems could very well be linked to Chiari.

So as you can see, I am finding myself YET AGAIN in need of many prayers.  I NEED this appointment to go well on Tuesday.  I NEED this doctor to see what I see and to have some possible answers.  I NEED this doctor to see that my son is in pain and that this is greatly interfering with his life.  I NEED this doctor to understand that my child does not show pain like typical kids, and that just because he isn't screaming all day does not mean he is not in excruciating pain.  I NEED a miracle.  Can you hope for one with me?

Thank you, as always, for your endless support on Little J's journey.