Primary Children's

This is going to come with a lot of heat so prepare yourself friends and family.  Many of you know of our recent stay at Primary Children's.  If not let me give you a little overview of what we've been doing for the past 24hours. 
Yesterday morning I took Bridger in for an MRI.  This is a MRI that I have been BEGGING for them to do ever since he acquired his left sided weakness in MAY.  Our neurologist at that time blew me off repeatedly stating that this weakness was not common but "normal" for children with seizures.  I however continued to pester and squeak.  Call it mommy intuition.  If they weren't going to do an MRI then I wanted other tests done.  Different tests were promised.  None of them were EVER done despite my constant nagging.  Once we got our new neurologist he agreed that it wouldn't hurt to do another MRI.  Perhaps there was an abnormality with the brain that was missed?
The results were not even close to what we expected.  After Bridger's scan was complete and I was waiting for him to wake up the NP for MRI asked me to not leave because a neurologist had been paged to come talk to me.  Never a good thing to hear after an exam right?  When the neurologist arrived she explained to me that the MRI showed a subdural hematoma on the right side of Bridger's head.  She explained that this is most likely what caused Bridger's left sided weakness.  That means this has been in his head for 3 MONTHS.  The neurologist explained that we will be getting a consult with a neurosurgeon.  She also explained that this type of unexplained brain abnormality is common through head trauma.  She asked whether or not Bridger had ever been dropped or fallen off of anything.  He had not.  She asked if he had ever had any type of severe blow to the head.  He had not.  She then explained that because of the findings we would have to be evaluated for child abuse.  This makes sense to me.  I understand it is the law that when something odd like this shows up certain steps need to be taken.  We were completely compliant with that. 
Bridger had an entire skeletal x-ray done and then we waited, and waited, and WAITED in the ER.  A neurosurgeon resident talked to us for a few minutes and basically told us he'd come see us tomorrow with his boss.  After that we waited for about 4hrs.  We were seen by THREE different trauma docs and residents.  The last one we saw was a treat.  I told her our story of his infantile spasms and how a few days after we left his left side became drastically weaker which is why I have been begging for an MRI for the past three months.  This doctor proceeded to tell us that they only way that our son could have gotten this injury was from a traumatic blow to the head.  She stated that it was VERY unlikely that this hematoma came after his seizures started and that his infantile spasms were most likely caused by whatever head trauma he did receive along with the hematoma.  She explained that we would be admitted to the hospital and that we would be seen not only by Safe Families but by Child Protective Services as well.  She told us that there was a cause for this injury and that we would not be leaving until they knew the answers.
Needless to say we as parent's, along with our family, were infuriated.  You are telling me that the ONLY cause for this is from someone beating the crap out of my kid?  Seriously?  Even when we explained that we have a genetic blood clotting disorder in my family called Factor 3?  If you know either sides of my family you can only imagine how badly this was taken.  It was like putting a match into a haystack.
Jake and I did still want to be compliant because honestly we have nothing to hide.  We didn't want them to think we did.  The next day we had several different doctors come in and see us.  The neurosurgeon told us that we would not pursue surgery and that we would just monitor it for the time being.  As a parent I'm not ok with this.  He's had it for months.  It is HUGE.  If it was in a normal sized adult head we would be in a coma.  We feel like it is an accident waiting to happen.  However if it can resolve itself great.  So we will try to wait.  Our neurologist showed up unexpectedly and he was very confident that the hematoma was the cause of Bridger's left sided weakness and that the cause was not from head trauma.  He had several different ideas.
We ended up calling social workers and having them talk to us and my dad spoke at great length with patient relations.  By the time we actually had the meeting it ended up only being with Safe Families.  Along with the doctor for Safe Families we had our Family Doctor, a family friend who is a lawyer, and a social worker.  We were done playing games with there facility.  As expected everything went fine and the Safe Families explained that Bridger showed no signs of abuse (no freaking DUH).  If he had been abused his brain would have some sort of damage.  His brain (aside from the hematoma hovering over it) is perfect.  It is where it should be!  So they chose to NOT call CPS which brought us to the conversation that we had with the trauma doctor the night before.  We explained her discussion with us and hopefully Safe Families will be true to their word and educate her.  Regardless Primary Children's will be hearing about this treatment along with a long list of other incidents of mistreatment.
It was decided that hematology and the genetics team would get involved with Bridger's treatment to determine if any of those factors would have caused the hematoma.  After 4hrs of waiting however we were discharged and told that our family doctor would have to take care of that.  I guess if it isn't child abuse it isn't a priority anymore.  Put that on the list too.
The point of this is that we are done.  We are so fed up with the treatment we have received.  I have spoken in length with patient relations but it is not enough my friends.  As my husband has said "This is not discrimination against Jake and Cretia."  If this is happening to us this is happening to HUNDREDS of families.  This must stop.  This incident is just the tip of the iceberg for our family.  There are multiple issues and problems we have had with Primary Children's.  That is why Jake and I are on a mission to find as many families as we can who are willing to share their story of any mistreatment they may have received at Primary Children's.  We will be compiling any and all incidents and be meeting with patient relations along with all appropriate administrative persons.  We will give them the opportunity to make all appropriate changes that must be made.  However if these changes are not made this will go public.  We will contact every newspaper and news station that we can.  Do we want money?  No.  We want people to be treated right.  We want people to be able to go in and get they treatment that they deserve.  This is about respect and maybe even a little bit about justice.  Changes will be made whether it is done the hard way or the easy way.  Game on friends.
If you or anyone you know has any incidents they would like to share and feel comfortable being involved please contact me at either lucretiastalling@gmail.com or 435-553-8278.