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.                                       

Maybe it's not so bad

As I'm sitting here waiting for Bridger to get out of his mri I recall everything that has happened. We seem to have weekly fiascos with either the doctors or the medication. It makes me so angry. I guess that is why when we came in today I had my dukes up ready for a fight.
Of course when we get in Bridger has a temp of 103.0 and of course they won't do the mri. I argued about the fact that he got shots yesterday. That helped a little. They waited and he went down to 101. They still wouldn't touch him. By this point Bridger was screaming because he had been npo since 0530.
I don't know why I did it but I gave him Tylenol knowing full well this would ruin his npo status. I just wanted him to feel better. Needless to say the nurse practitioner was upset. She confronted me about it. She was great about it. She explained that we are a team together and that I need to communicate what is going on. This made me cry. I've never once in my entire son's treatment been talked to like that. We're supposed to work together? What!? It was refreshing although it caused me to lose my composure and boohoo. Go me for being THAT mom today. Awesome.
In the end we were able to get the MRI done. I hope the results aren't too terrible. We just want our little boy to have the best life we can give him. Just need to know what could be wrong. Hopefully nothing new. Plus it's nice to know there are some humans who work in pcmc.

Fight, Flight, or Freeze

As I sit back and think about all that has happened to us in the past few months it amazes me that we aren't in some corner sucking our thumbs rocking back and forth.  Some how or another we've managed to keep ourselves (most of the time) together.  I think this is due to a lot of reasons but one thing comes to mind.  There is a theory that is based on people's first reactions when they are faced with a crisis.  They can either fight, flight, or freeze.  These reactions are pretty self explanatory but I'll explain them a little bit.

The fight reaction can be a lot of different things.  You can fight and persevere through the crisis.  You can fight and deny everything that is happening.      
The flight reaction is reaction is basically when a crisis hits you turn tail and run away as fast and as far as you can. 
The freeze response is something that has recently been added.  The idea is that when a crisis comes instead of fighting or fleeing you freeze like a deer in headlights. 

There's a great article from a stress website that talks about these three responses.  They have a great explaination of these three

"The fight or flight response (in its original form) is about survival. It's about hope. We activate it when we believe there's a chance we can outrun or outfight our attackers. The freeze response however, gets activated when's there's no hope."

 

I wish I could say that when this all started we were fighters from the get go.  We weren't.  We froze.  It was like drowning in a mud puddle.  Each stroke caked more and more mud on our arms.  We felt like our little boy was doomed.  I felt like my baby had died.  It took Brigder's seizures getting to the point where he was in intense pain and absolutely hysterical after each cluster for us to snap out of it.  After that we chose to fight.  Sometimes I feel like we are in a constant reign of fire.  We are THOSE parents and we will continue to be.  I suppose the message is that you can chose to change your response to situations.  You can fight, flight, or freeze as much as you want.  To this day I still have moments where I freeze or what to run away.

Recently Bridger's development was evaluated and he was put at like a 2-3 month level.  I wanted to run and hide in a corner!  That seems so far behind although it isn't.  He's made so much progress!  Which by the way...

 

BRIDGER ROLLED ON HIS OWN TODAY!!!! :)

 

I think we'll keep on fighting for these good moments :)

 

 

Fight, Flight, or Freeze article         

 

 

Sabbath Day Thoughts

This is going to be mushy so bear with me.  Seriously.  Like gooshy moosh oozing out of your fingers mushy.  I can't help it.  Blame my papa :)

Recently we had a patient at our hospital that has dealt with severe epileptic problems his entire life.  Tell me if I'm violating HIPPA at all through out this story guys!  He was in his upper 40's I think.  He wasn't all that responsive from what I gathered.  He had the best mom.  She came in every day and stayed with him for hours.  I always admired her from afar.  Since Bridger's problems started I've always tried to be strong like her.  One day I finally got the courage to go in and talk to her a little bit.  She was one of the first few people that I went and openly talked to about Bridger.  I didn't want to bombard her so I waited for a similarity that her and my boy had.  They ended up having some of the same medication I think?  Anyways after that we got to talking about his story and Bridger's story and she became a wonderful friend, advocate, and greater strength to me.  Going to work was extremely difficult for me but she would always come and chat with me and cheer me up.  She helped me a lot.  I wish I knew where they were now because I have so much to thank her for.

I know I don't generally bring this up but I want to talk about God.  Rarely do I give God as much credit as He deserves.  Have you ever read the poem Footprints In The Sand?  As I look back at our struggles this poem always seems to come to my mind.  I'm sure that quite literally we have been carried in His hands the entire time.  No way could we as mere parent's have done this on our own.  No matter how amazing Jake is (not that I could do this without him either)!  I truly admire people that have the ability to go through awful trials with nothing to lean on.  I am not that strong.  There is a scripture in Alma 26:12 that says:

 Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land which we will praise his name forever. 

                

I will never be able to boast of my strength in all of this because there is no way I could have done this without God.  I have been able to do things that I never thought I could emotionally, physically, mentally, and spiritually handle.  Having a sick child was one of my worse fears.  When I understood the severity of Bridger's condition I locked myself into a bathroom and cried for what seemed like an eternity.  When the doctors came in God was able to slap me into shape so that I could face them and take charge.  I say this so often but I am NOT a confrontational person.  I do not like going against the flow of things.  I do not like to question authority (although I know my parent's and husband would suggest otherwise).  I've been blessed with strength through God to be able to be a strong advocate for my child.  I've become someone that I had no idea existed and again because of God it has been possible.  I'm definitely not walking on my own yet.  I guarantee God is still carrying me but perhaps soon I will be able to take some timid steps on my own.  I doubt I'll ever be able to walk by myself because I need to lean on God so much. 

I suppose my message to everyone is that God is awesome!  I try not to smother my beliefs on people but wow no way could we be where we are now without Him.  Plus it's Sunday so I feel like I get a freebie with the whole God talking thing :).  We have been blessed with many tender mercies.  We have seen many miracles and I hope we continue to see them.  I'm full of great scripture today too!  My last thought is this:

Nevertheless the Lord seeth fit to chasten his people; yea, he trieth their patience and their faith.  Nevertheless- whosoever putteth his trust in him the same shall be lifted up at the last day.  Yea, and thus it was with this people.  

Mosiah 23:21-22

For behold, are we not all beggars?  Do we not all depend upon the same Being, even God, for all the substance...which we have of every kind?       

Mosiah 4:19 

Ha!  Tricked you!  Two final thoughts :) Love you all have a great Sunday and THANK YOU for all your support.