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. 

 

Grandma Nancy (Guest Post)

I remember the exact moment that I heard that Bridger was having seizures. We were at Hunter’s Seminary Graduation and we got a text message from Jake that said, “We are at your house, we think Bridger is having seizures.” We made it home as soon as possible and found Jake and Cretia desperately trying to contact their family doctor.

After that at least a week had gone by. Bridger had been to Primary Childrens Hospital where tests were done and a diagnosis of Infantile Spasms was given. I had not yet seen him have one of these seizures. Then one afternoon Jake and Bridger were at our house. Bridger was crying and I looked and saw that Lance was holding him, while Jake was timing something. Next I saw Bridger’s little body crunch up and I noticed discomfort in his face, while Jake was timing the seizures and counting the crunches.

I seriously wondered why this was called a seizure, because it looked nothing like the seizures that you see on T.V., or even in real life-when people fall down or shake uncontrollably. I was sure there had been some mistake made in his diagnosis. I thought maybe he had been exposed to some toxic substance that was causing these spasms, or maybe something in his baby formula. I researched all kinds of products from paints, and odor sealants to baby food.  The results were that I didn’t really find out anything that I had not already known.

Jake and Cretia said that the “main objective”, the top priority was to stop the seizures. It began to get very difficult to watch all that Bridger had to go through in order to accomplish this “main objective”.

The medicine regime was out of control. Half of the medicines were simply to counteract the effects of the other half.  Within no time the sweetest baby in the world turned into a prickly porcupine. He didn’t even want to be picked up or held. You had to just set him up in an infant seat and listen to him moan.

One day our good friend Russ Wallis came to the house to check on how everyone was doing. I remember telling him that what Bridger was going through was like something that you only read about in the Bible. When people would bring their suffering loved ones who were blind or lame, even children who were stricken with seizures to the Savior, Jesus Christ to be healed. There was no other option, nothing else could be done….and Jesus would heal them. I said and really felt that way about Bridger. I think Russ thought I had lost my mind.

Since then many of our friends and family, even strangers have joined us in prayer to ask for Gods intervention on Bridgers behalf. We have not seen him miraculously healed, but we have seen miracles. His body is pudgy and round, he still gets mad when you pick him up, he needs a lot of help to even roll over. But when you look in his eyes his spirit says, “I’m here!”  And on a good day he will even talk to you in his own special baby language.

We feel so blessed to be able to have him in our lives. So glad to be able to share in his care and growth. He makes our lives better. There really is nobody just like him.

New Baby!

No, no we're not pregnant again.  Crazy people.  We do have a new baby in the house though!  Bridger ceases to amaze me at this point.  He smiles, giggles, plays with toys, and even likes tummy time again.  It is weird to see him this way.  To me this is not normal.  It's definitely more enjoyable than how it used to be.
Remember when I talked about routines?  As humans we innately have routines.  We thrive on routines.  It throws us in a loop when those routines get messed up.
We had a routine down.  Bridger was sick.  Everything he did was because he was sick.  Any odd movement or jerking was a seizure.  Bridger sleeping all the time was because of his medications.  Bridger NOT sleeping was because of his medication.  Bridger crying ever two hours of the night were because of bad dreams or seizures.  Or both.  There was a point that whenever he started smiling we knew a seizure was close behind.  This was our routine, our daily lives, and how we lived each day.  Things are different now and our routine has changed.  It has been hard to adapt.
You would think it would be easy.  I'm not saying that we aren't just ecstatic with where we are now.  Because we are!  I'd say we almost feel like it is too good to be true.  We have been so on edge (well maybe just I have been on edge).  Now that Bridger is not being overdosed, the seizures have stopped, and the crazy brainwaves are gone, he is acting so weird!  It is driving me crazy!               
    

That about sums up how I'm feeling these days

 He moves around all the time!  Repetitively.  He kicks and wiggles and flails his arms all over the place.  He takes his arms and smacks them down on my or the bed over and over again.  Ah!  Is it a seizure???  He has moments where he'll start screaming his head off and then instantly stop.  Little seizures maybe?  There was one night where he puked up everything he ate and woke up every two hours.  Great now he has seizures and a tape worm in his gut.  He keeps on grabbing onto his ear.  Ugh ear infection?  He won't look at me, he looks at everything else going on like bright colors, music, and of course the fan.  I knew it, his peripheral vision is ruined because of the Vigabatrin.  Oh no he's smiling again!  Here comes a seizure?!  He's sleeping all night again.  Did he go into a coma?  Is he breathing?  You better believe I'm checking on him every hour of the night.  Gah!

I started bringing this up to people and they all looked at me like I was crazy.  Want to know what response I got?  

This is what normal babies do.

These things are normal?  All weird movements and moments of hysterical crying are not signs of total catastrophe inside my child's brain?  What?!  This is not normal for us.  The routine that we were thrown into for 2+ months was not like this.  We are SO backwards!  

Bridger's physical therapist came over yesterday and she was impressed on how well he was doing.  She kept on commenting how he is like a new baby.  I explained to her how confusing it is to have him "normal" again.  She smiled at me then looked at Bridger and said, "you're going to have to teach your mommy all over again."  

I don't know if I'll ever stop worrying about seizures in the back of my head.  We're still not out of the woods yet.  He'll have to be weaned off of his medication eventually and who knows if the seizures will stay away.  They could break through and come back.  When he started getting better and laughing again I commented to Jake that I am afraid to enjoy it.  I'm afraid to get used to this new baby.  I don't want to get attached to his laugh, his smile, and his improvement.  What if it goes away again?  I can't imagine feeling that heart break all over again.

I have a pretty smart husband.  He told me that if it does go wrong again it will hurt regardless.  Why not appreciate and enjoy him?  No matter what the pain will still be there if the seizures come back.  Just enjoy him.

So I have been.  Every smile and every giggle I get from him is a blessing.  One that may or may not be taken away from me again.  Once again the routine has changed and now Bridger has the reigns.  It's been fun so far and I hope it stays that way.  On a final note here's what we wake up to...EVER MORNING at 6am on the dot!  :) 

                                   

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New Appointment

Yesterday was a long day for us.  We spent most of it at Primary.  Bridger and I woke up early and headed in to get another EEG done.  He decided to be difficult today when hooking him up!  It was funny :) he is a strong little boy.  Once he was hooked up he calmed down and went straight to sleep.  What a turkey!  They were really great there and even let us go an extra 15mins just to make sure we got a good EEG session.  Next we hurried over to the library.  I wanted to get as much medical information on Infantile Spasms as I could.  I asked the librarian if she would search up stuff for me in all the books they have while I'm at our next appointment.  She was great. 

Sleepy Boy :)

We rushed on over to the third floor and went to our Ophthalmologist appointment.  If you ever go over there I hope your receptionist is Rick.  He is the nicest guy!  He chatted with me and made me feel right at home.  The eye doc was great too.  They went right to business.  I did feel a little rushed but he explained everything they were doing.  He also typed it all up and gave me a copy of our session.  They dilated his eyes and did little tests with him.  His eyes are doing great still. If you don't remember we go to the Eye Doc because of the vision risks that come with using Vigabatrin.
After this we went back down to the library and read up on all sorts of journal articles and books about Infantile Spasms.  There isn't a whole ton of information but it was enough to confirm everything that I have learned.  I was ready to meet with the Neurologist.
When we met with Dr. Zilenski we also had a social worker, Debbie, who came with us.  It helped to have a mediator with us.  She took great notes and talked with me afterwards.  I'd recommend having a social worker.  We began asking the Doc several questions.  We had both written questions and family members had as well.  He was patient with us, he listened, and explained everything in detail to us.  He even drew us pictures.  However he backed up our Doc that messed up and made the mistake seem minor.  We agreed to disagree.  He felt like everything we had done thus far had not been a waste of time either.
He did show a great amount of concern when we explained his left-sided weakness and that it was coming back again.  He agreed that another MRI should be done soon.  He was also able to take a look at the EEG we had that morning.  He is trained to read those but he wasn't the one reading them today so he couldn't give us a definite answer.  He did say that to him it looked like the hypsarrthmia waves were gone.
To remind everyone the hypsarrthmia waves are the crazy waves going on in Bridger's brain all the time and what defines his seizures as Infantile Spasms.  We were cautiously optimistic to hear this but did not want to get our hopes up.  Jake and I had discussed if the EEG did come back clean we would request a 24hr EEG just to make sure they really are gone.  The Doc didn't see any reason to do it but we insisted it be done.  I'd like it to be done when he gets weened off of the Vigabatrin.  I want to know absolutely sure that they are gone.  Even if they are I can't deny that I won't be paranoid about it for the rest of his Bridger's life.
With concerns towards our old Doc we still wanted a new one regardless of how sorry she was.  We felt more comfortable having someone else see us the rest of the way through.  He wasn't too helpful with this but said he would email the Doc we wanted and see if he'd be willing to work with us.  Hopefully he does.  If not we agreed to see our old Doc as long as she was supervised through out our appointments.  Please new Doc take us!!!
Once this was all said and done we had to go to ANOTHER appointment.  Bridger had an ERG done.  This is where they place a contact in the eye with electrodes hooked up to it.  They then flash lights into the eye to see how it responds.  Normally they like to put kids under for this but the Doc who does this (Dr. Creel) felt confident that he could do it without anesthesia.  He did too!  Bridger was a little ticked off at first but Dr. Creel numbed his eye right up, then stuck the contact in (EW), and did the test.  It seriously took less than 10mins.  It was great, disgusting (I hate eyeballs), but great!  I didn't get a picture of Bridger but this is what it looks like minus the eye patch.  Pretty icky.  Eyeballs.  GROSS.     

Ew.

 

After the ERG we went back and talked to the social worker and she made sure we felt like we were getting the treatment needed.  She also wrote down a list of everything that was said needed to be done and she is going to make sure that it does get done.  We really lucked out.  Get a social worker if you're going to be a frequent flyer at Primary.
Bridger and I finally got to go home.  It was a busy day.  I felt like it went well and we were heard.  I forgot to mention this but we were frustrated with how there is absolutely zero information available about Infantile Spasms and that the Docs never actually sat down and explained to us what it was and how severe it is.  He thought this was a problem too and is going to work on making discharge packets for families to take home with them.  He also wants us to look through the packets they make and let them know if it is helpful information and see if anything is missed.   

The best news is as we were driving home Dr. Zilenski called me and let me know he spoke with the EEG interpreter and she felt the same way as Dr. Zilenski.  Bridger's EEG is hypsarrthmia free as far as we know.  I wish that this was the end of the Infantile Spasm journey but we are still in the middle of the woods.  He could still have breakthrough seizures and they may also come back when we try to wean him off of the Vigabatrin.  We're optimistic and happy but still cautious as we continue this adventure of ours.