Day 2

5:41:00 AM Atticus Army 1 Comments

Hey Army,

Well as many of you may have known we had a consultation appointment with a neurosurgeon this afternoon in Spokane Washington.  Long story short we are currently at the Seattle Children's Hospital ICU.   Maybe I should jump back a little bit and fill you in.

Our appointment in Spokane did not go well at all. We just really felt that the Doctor was not confident at all in doing the surgery.  After talking with him and discussing his background he only does about 10-15% of pediatric cases.  We did not find this very comforting so we felt that we probably should start looking else where.  We left this appointment very broken and feeling like we had no options.  We spoke with him about Seattle Children's and Primary Children's, and he said that he would try and email Primary Children's tomorrow and see if he could get us a consult.

You may or may not be aware, but you can't just walk into or call a facility like these and be like, "Hey, I need an appointment today"  Typically it takes a little bit, you need a referral, they then have to review your case, then sometime in the future you get an appointment.  However after our super exciting appointment today I frankly was upset and very flustered.  So I immediately called Primary Children's Hospital in Salt lake city.  They, unfortunately, were closed (curse you time zones!!!), and then I called Seattle Children's Hospital.  I was able to speak to a very nice front office lady in the neurosurgery department and she informed me that the doctors have "rounds" on Wednesday where they will go over any newly referred cases and determine the need for each case.  She said that I would need a referral and once they got my records they could submit them to rounds and we could go from there.  This explanation, however reasonable, was not a great option for a frustrated dad coming from an appointment where the Dr literally said, "well if you want me to I can give it a good go..."  I told her that a week just won't work and what had happened earlier that day and that I just wanted someone to at least look at the MRI.

For some miracle of a reason (all of your prayers) she put me on hold and next thing I knew I was speaking with the primary nurse practitioner over the tumor ward!!! YEY progress.  She was WONDERFUL, listened, took our history, I was able to get the MRI directly to her, and she bypassed all the loops and got us an appointment for Wednesday, and she promised they would review our case in their weekly rounds.  Needless to say, we were very happy and felt much better.  We felt that we should still pursue Primary Children's and then we could make our choice as to whichever one felt better.  Alas, it was not meant to be for a short 30 minutes later I got a call from a Radio-Oncologist from Seattle Children's Hospital.  She said that our wonderful nurse that I spoke with stopped her in the parking lot as she was going home and said you need to look at these images.  She informed me that she had already called back to our hospital and got the digital images sent directly to them and she was sitting with the Neurosurgeon going over our case.  WOW

As happy as we were.... it was a little disconcerting that it was happening so fast.  But she was very nice asked a bunch of questions, gathered our history, and she said,"let us keep going over this and I will call you back in about 10 minutes with a plan."  So effectively, somehow, we had now bypassed the required referral, the required rounds, and setting up an actual appointment for a consultation.  

Just as promised she called back and Emmie and I listened carefully as I put her on speaker phone.  The first thing she asked us was where we were, I said we were still in Spokane, and she said.... "well after reviewing your sons MRI, we are really concerned about the placement of the tumor, and the possible entrapment of CSF flow which could lead to encephalitis.  We need you to drive here tonight.  I have already spoken with the ER staff and the on-call neurosurgeon is here with me and we will be waiting for you when you get here."  There are no words to describe the amount of panic, concern, terror, and about every other feeling that immediately flooded through both of us. 

We quickly gathered our things and got in the car and started the 5-hour drive to Seattle, running the gambit of emotions the entire way. But thanks to our wonderful sister and mother for helping with our kiddos, that we just about forgot to tell we were leaving in our whirlwind of emotions and to my wonderful Vet school family for taking care of our furry kiddos as well.   





We arrived at Seattle Children's ER at about midnight, and WOW what a difference from our previous experience 9 short hours ago.  Since being here we have met both pediatric ER doctors, the neurosurgeon, both of our ICU doctors and countless other support staff.  We are currently in the ICU on neurology watch, later this morning between 8 and 10 all the doctors will be in and do their morning "rounds" and I will be able to sit in on them and get the plan for the coming days.  I understand it will entail an angiogram, blood work, possibly more imaging, and surgery later this week. 



It has been a crazy day and as I sit here at 5 am with not an ounce of sleep, somehow I feel a little bit of piece. 
Thank you for being a part of Atticus's Army, your prayers and supports have been felt today