Moment in Time

It’s amazing to me how much better I am doing because Travis is doing better. There is definitely too close a connection between his well-being and my own. I am working on the effect his deteriorating mental health was having on my own. I write about how much better I am doing and have been giving a lot of credit to focusing on self-care. How much is actually due to the relief I am feeling because Travis is doing better?

I understand that it is a waste of my time and energy to look back at the past. I can’t change it. But what I can do is use Travis’s past experiences to effect change for others. That is one of the reasons I am telling our story. My hope is that others will learn from it.

I am finally ready and thinking clearly enough to share our most recent experiences with some of the staff at our local hospitals. I’m sure they can make some changes at the hospital care level, but most of the changes will have to come at the state level. I will tackle that letter next!

My regular readers will remember some of the details I touch upon. But the letter also addresses why it is dangerous for a hospital to release patients based on their behavior at a moment in time, without considering the concerns of loved ones.

Here is the letter I sent today.

Re:  ER Visit, Travis Kastle, 3/28/22 – 3/29/22

I wanted to share our family’s experience at the MCR ER with all of you. 

Let me give you all a bit of background information.  Our son, Travis Kastle, has several diagnoses.  He is autistic, with an intellectual disability, and severe mental health challenges.  He has been brought to both the MCR and PVH ER’s on multiple occasions.

Each time he was released to us or a caregiver.  We were told on these occasions that there was nothing else that could be done, that we were already doing everything possible.  Based on our experiences, if the patient already has a therapist and a psychiatrist, and he is already on medications, then nothing more could be done.

On one occasion we were told that Travis could not be put on a mental health hold until he actually made a suicide attempt.  To which I replied, “What if he is successful on his first attempt?”

On another occasion Travis was given a packet of papers at discharge.  One of the sheets had a list of ideas of things one can do when feeling depressed.  It included ideas like; light a candle, put fresh flowers on your table, take a bath and take a walk.  Deep sigh.

Travis was on a medication, Abilify, for quite some time.  At one point his psychiatrist took him off this medication because he believed that it was causing high glucose levels.  Travis’s mental health immediately deteriorated.  I brought him in to see his psychiatrist for an emergency visit.  After that visit his psychiatrist put him back on the Abilify.

I understand the importance of physical health and the complications of side effects.  But if Travis kills himself the glucose number becomes insignificant. 

Several months later, Travis’s psychiatrist once again decided that he could no longer prescribe Abilify.  Once again his mental health took an immediate hit.

Travis has been on psychiatric medications since he was seven-years old.  He has tried most of them at some point in time.  That is why I was extremely reluctant to quit one that gave him some relief.

Over the next few months his doctor tried a few different medications.  I was becoming extremely concerned with Travis’s mental health and his behaviors.  He sent me several texts that were of concern to me.  I forwarded them to his psychiatrist.  I asked his psychiatrist to admit Travis to a hospital until we could get him stabilized with medications.

Travis’s psychiatrist called Travis and determined that he was fine in that moment in time and disregarded my concerns.  Much like the ER’s have done on many occasions. 

Travis was destroying property.  He tore sheetrock off the walls in his home.  He was ranting and full of rage more and more often. 

As a parent it is impossible to determine at what point in time your child may go over the edge.  If the recent stories in the news aren’t evidence enough that parents underestimate the mental condition of their child, then I don’t know what is.

After yet another fit of rage, ranting, and destructing property, Travis agreed that he needed help.  He walked into the MCR ER at his father’s side.  He shared that he was having thoughts of hurting himself or someone else. 

I am normally the parent that takes Travis to all of his doctor appointments and has all the information regarding his care.  I happened to be home sick that day.  My husband (Travis’s dad) asked the crisis management staff member to call me at home.

This staff person did call.  Once again, I was being told that the plan was to release Travis.  I have to be honest.  I had a bit of a meltdown myself.  I told her that Travis needed a psychiatric bed, and we were not taking no for an answer.

I told her that if Travis was released and ended up hurting himself or someone else, I would get on national television and tell the world that I begged the hospital to admit him, and they refused.

I asked her if this is why the state of Colorado is at the top of the list for suicides.  Because it was so hard to get a psychiatric bed.  Or that it was determined admitting to a hospital wasn’t necessary, when really it was.

Your staff member shared with me that it is hard to get a psychiatric bed, but impossible to get a placement for someone who is autistic with an intellectual disability.  I was shocked that she said this out loud.  I am shocked that this is the case.  First, because this is DISCRIMINATION.  And second, mental illness is fairly common among autistic individuals or individuals with an intellectual disability.  Are we going to just ignore the needs of this population?

Your staff member shared with me that the professionals at the psychiatric hospital didn’t know how to help this population.  If the trained professionals don’t know what to do, how do you expect parents to know?

The staff member said she would need to call me back.

Meanwhile, Travis is in a room at MCR that reminded me of a jail cell.  The only furniture was the cot he was laying on.  It wasn’t even a bed.  My husband had to ask for a pillow and a blanket. 

Our son wasn’t offered anything to eat.  My husband had to ask.

Our son was not brought in by the police in a dangerous state.  My husband had already calmed him from his extreme rage.  He came in calm, with his dad. 

Each time Travis needed something, my husband had to ask one of the two security guards out in the hallway. 

My husband left around 7:30 pm.  He had been told that Travis would be transferred to a room.

Only he wasn’t. 

My husband and I both went to MCR the next morning.  Only one of us could go in.  I arrived somewhere between 8:30-9am.  After sitting there with Travis for a couple of hours I had to ask the security guard if Travis could get something to eat.  A nurse came by and said she had checked at 6am but Travis was asleep.

I can’t help but think if Travis was in a room, he would have had better access to a nurse and food.  It wasn’t until later that day that a security guard showed us a phone on the wall.  Although he couldn’t find a menu.

If we were not there to ask for his basic needs, I can’t be sure he would have received a pillow, or blanket, or food. He was given paper scrubs to wear.  How can anyone be expected to wear these for any length of time?  Especially someone with sensory issues?

I sat in that room with him for about nine hours that day.  I can’t believe this is how a hospital treats our most vulnerable.

I did have a conversation with staff.  I asked if Travis presented with a physical condition would he have been put in this room.  I already knew the answer.  The answer is no, although she didn’t respond.  I asked if my son had better insurance, i.e. not Medicaid, would he have been admitted to a room.  I didn’t get a reply.

A staff member asked my husband about Travis’s medications on the first day.  He asked them to call me.  I didn’t get a call.  I don’t believe Travis received any of the medications he was prescribed at the time on his first day there.

He did receive medications that calmed him and made him sleep through most of this experience.  So you can’t tell me that he wasn’t admitted to a room because he was unsafe.  And one of his parents was with him for most of this experience.

Travis did get a transfer to Peak View Behavioral.  He spent ten days there.  Evidently, they deemed it necessary.  They listened to our concerns.  The Nurse Practitioner assigned to his case asked me for a list of the previous medications tried.  After going through the list she asked me if he had ever been prescribed lithium.  I said no.  She asked why not.  I didn’t know.

Travis was taken off his current medication and started on lithium and Invega.  With Zyprexa on an as needed basis.  Travis responded immediately.  It took the ten days to get the dosage right and get him to a good therapeutic level.

When Travis was discharged his new medications were called into our local pharmacy.  Travis has a nurse that comes to his home once a week to refill his locked medication box.  I met him at Travis’s home and he called Travis’s psychiatrist to update him on the new prescribed medications.

Travis’s psychiatrist was unhappy with the new medications and shared that he may not renew them.  Well, now we know why Travis had never been prescribed lithium.  He had been seeing this doctor for ten years. 

Let me tell you why I think it is important for you to understand the back story.  If the ER had actually taken us seriously about our concerns during any one of our many past visits, Travis may have been sent to a facility years ago that could have stabilized him on the correct medications.  And saved him and our family a great deal of distress.

If the on call psychiatrists at any one of the many past ER visits had actually taken the time to hear our story, maybe they would have made some medication changes.  It is simply not safe to assume that a patient is getting the best care just because they are already seeing a psychiatrist.  Our experiences indicate that additional care is being withheld from those that might need it.

Travis is a client at Foothills Gateway.  My understanding is that his psychiatrist sees all of the Foothills Gateway clients.  I don’t know why he didn’t prescribe lithium to our son.  Travis was never given the opportunity to have a second opinion from another psychiatrist at your hospitals based solely on the idea that he already had a doctor.  It just doesn’t make sense.

Based on our experiences, it is my opinion that the professionals are ignoring the red flags.  And ignoring the parents.  It is true that no one knows at what point a person in a mental health crisis is going to snap. 

The closest thing to an expert on Travis is me.  I simply couldn’t allow my son to get to that point.  Was he there?  I can’t say for sure.  What I can say is that our family couldn’t continue on with more of the same lack of treatment.

So, I pushed your employees really hard.  Our system is broken.  A family shouldn’t get to the breaking point in a crisis situation before they are heard.

Your staff was frustrated by the situation.  And we could tell.  The mental health system in Colorado is abysmal.  Your staff is not to blame.  But, neither are we. 

It is true that our son has many supports in place.  For most individuals it would be enough.  Please take parents seriously when they are telling you that their child is slipping through the cracks or needs more support. 

I wouldn’t have pushed so hard to admit him to a psychiatric hospital if I didn’t think it was absolutely necessary.  Travis still struggles with his mental health, but he is more stable today than he has been in years. 

I apologize for behaving like a raging mama bear to get his needs met.  I don’t like to think about what may have happened if he were not admitted to Peak View Behavioral. 

Instead, I will focus on how much better he is doing.  I can’t change the past, or this experience for him.  But maybe one of you will take action, put some changes in place, whatever it takes to make sure others have a better experience. 

Thanks for taking the time to read this.  I am inserting a picture of the room, although you have probably seen it.

Also, it would have been nice if when Travis was discharged someone advised us to bring his medications.  And some clothes.  We were also not told that Travis would not be able to have visitors. 

Glenda Kastle (970)217-2736