HOUR 11 – E.R Odyssey Contiunes PART 3

Outside is a beautiful day …
Blue skies with puffy white clouds. The kind of clouds that make you want to sit back in a field and stare at the sky. While trying to name the shapes of the varous clouds. A bit of a breeze blowing to take the edge off the heat. Today would be the perfect beach day … enjoy the waves with your childern, family and friends. A great day to be on the boardwalk playing games, riding rides or eating ice cream. A glorious day to go claming in the bay – then enjoy the days catch with a surf and turf bbq with loved ones.

But none of that is for Keri and I. I will get a 5 min glimance of the outside when I can get a chance to have a cigarette. Keri is stuck in room 34 in the E.R. We have gone over the 24 hours of being here. We will now be working on 48 hours!

Currently, she is resting peacefully from a drug induced sleep. Keri had another meltdown. John was barely unable to hold her down. I had to call the nurse in. The Doctor gave her a shot of Ativan to calm her. These hospital’s psychiatrist doctor prescribed over the phone an increase of her current meds. Keri will now receive 3 times a day .1 mg of clonidine, 2 times a day 200 mg of tegretol. The abilify will remain the same of 10mg 2 times a day.

Before this meltdown, I finally was able to speak with her primary psychiatrist Dr. L and the CMO Case Manager. Dr. L told me that because Keri’s meds have been changed so much that she needs to go into a psych unit in order to have any additional med changes monitored. That also it is too dangerous to just discharge her after the hospital doctor sees Keri. Dr. L also stated that this emergency room has an obligation to keep her until a bed has been found at a psych unit. Her CMO Case Manager said the same thing.

A different Mental Health Administrator came in to speak with me. She was very nice and explained the situation to me. Currently, Keri is scheduled to see the hospital psychiatrist Dr. Z. He is contacted with the hospital on an on call situation. Dr. Z will not be able to see Keri until 8 or 9 pm tonight. From there he will pressure what whatever place to find a bed for her. Ms.A (the mental health administrator) is in the process of calling places in this state and other states to find a bed. Yes, a bed out of state since no other hospital wants to take her or has an open bed.

You read that correct – a bed out of state in an out of state psych unit because there are hospitals in this state that are REFUSING to take her!!! From what Ms.A explained, a psych unit can deny acceptence for any reason like:

•Low IQ
•Non-verbal or limited communication skills
•Wears a diaper
•Certian diagnosises – like Autism, Bipolar, etc.
•The unit thinks the patient will not benefit from therapies offered at the facility.
•There is an over flow of a certian diagnosis ie: to many people with autism.
•Age despite a hospital’s website says the work with kids 5 and up.
•Insurance
•Or pretty much any damn reason the deem fit at any given moment.

So pretty much Keri and I are screwed at this moment. We will camp here at the hospital until a bed opens up.

But wouldn’t this be a form of medical discrimination? If a psych unit has an open bed and a patient is in need of it…
As long as the patient fits the basic criteria of the program – a child in a program for mental illness that is designed for childern regardless of the above. The same would go for an adult. Or maybe this state needs to open more inpatient facilities for people who autism or bipolor or whatever. It is not fair to have them sit in the emergency room for days at a time while in crisis until the parent who is too fusturated, stressed and tired and says to hell with it. Then have to take an unstable person home with no other resources to help them.

I will not be that person. I will not allow my daughter to slip through the cracks because no one want to help a child with autism/bipolar. I will not allow her to continue to hurt herself or me or other people. I will not allow either of us to become a tragic news story. I WILL CONTINUE TO ADVOCATE FOR HER AND GET HER HELP.

HOUR 11 – Emergency Room Visit Part 2

I left off that paper work had been filled out by me for Hospital M. I was waiting on transporting information.

Come to find out that Hospital M had additional questions about Keri.  Once the answers had been recieved by the Doctor at this hospital – they refused to admit her.

The mental health administrator at the ER said that said Hospital M felt that Keri was not a good fit. Also that Hospital T (a different hospital which Keri had stayed at with her first hospitalization) had no beds available. Hospital K and other programs refused to take her. Why? I will get to that in a moment. 

This administratior wants her to see their child psychiatrist, fo a med change and send her home. WTF!!!?!? SEND KERI HOME???

Not at this moment in time when she is a danger to herself and to others. I will camp out here all week until something can be found for her if I have too.

So some of the programs refused her based on age and medical conditions (autism, adhd, bipolar, and mild intellectual disability). So who do I hold accountable if when discharged Keri goes completely of the deep end and tries to kill herself, majorly hurts herself, or someone else… since I cannot get help for her? And with this you may wonder why some parents go off the deep end along with their kids and make the news – this might be the reason why!!!

But let me contiune from the point of refusal from last night … John and Maggie were here with me last night. Since, Keri and I had no other option, we stayed the night at the hospital. John and Maggie left since Keri was asleep and there was nothing to be done at that time.

I tried to fall asleep with 2 chairs pushed together and sitting up using a pillow against the wall for my head. I could not get comfortable not fall alseep. I also had a serious case of numb butt. A kind nurse brought a gurney in for me to sleep on. Not super comfy, but better then the chairs. I was able to get 4 hours of sleep.

I woke up at 7am. Keri was awake and ok for 5 mins. She then started to act up and climb the bed and get out of the bed. She started to smack on the computer in the room. I had to call the nurse’s station for help. Keri kept breaking away from my grip. In came 3 security guards to hold her down for at least 10 – 20 mins. Keri then got the “mega meds” to calm her –  a shot right to her arm.

It basically made her like a little drunk person. Keri had her morning meds minus the abilify. She slept for a little and woke up about 10:30am. She finally got her pill at 11 am about 4 hours after getting her first meds

Between 8 am and 10 am, I was on the phone calling her primary psychiatrist, her case manager for CMO. I was leaving messaves and trying to get
human or a supervisor that could help.

I will continue this in a new post … part 3. We have now been here for over 24 hours. And many more hours to go. Many days more perhaps…

Hour 11 – Emergency Room Visit

Keri had a complete and total meltdown earlier today. So here we are at the E.R working on hour 11. They have found her a bed or are working on finding her a bed at a pediatric psych unit.

Earlier today, Keri was agitated – for what reason is unknown. It started out with being upset and screaming and lost in her own little world. Her Granddad came over, Keri wanted nothing to do with him. All she did was grunt and scream in response to him.

About an hour or so after Keri’s Grandad left, she started to meltdown. Crying, screaming, trying to over turn the table in the kitchen. She knocked over a chair before flinging herself onto the couch. Once on the couch her rage did not stop. Keri continued with the self harm. She was pulling her hair. Keri was scratching herself – but left little to no marks since her nails had been recently cut. She was biting her arms. She then looked at her wrist and said “bite wrist” and proceeded to gnaw at her wrist.

I tried to talk her down, but she did not heed or hear my words. I tried to get in to restain her. But she was linging at me, trying to scratch me, bite me, hit and kick. Keri actually kicked me off the couch.  There was no way for me to get close to her. Keri also knocked items off the end table and threw the small drawer to the end table.

A while ago, Keri cracked the one of the windows by the couch and there are 2 other windows in the same area. I was afraid that she would further hurt herself or break a window or hurt me. There was no choice but to call 911.

The cops came, Keri stopped and was too busy staring at them. She was ok in the ambulance. In the hospital, she started to act up. They gave her a shot of something to calm her. Once Keri was calm, the nurse took blood samples and a urine sample.

While on this shot of whatever, Keri was still with her “not so great smile and laugh” and grunting. The agresstion was gone. Later on when this med wore off, Keri started to try to pinch, bite, and hit me. When she realized she could not get to me, Keri started to try to climb the bed. I could not get her down and had to call the nurse in. At this point neither the nurse nor I could get her settled down. The nurse had to call in another nurse and 2 security guards to help restain her. There were 2 nurses, 2 security guards, and me – 5 people having to restrain her!!! 5 people to hold down a preteen girl who weighs 108 lbs and is 4 ft 7 inches tall!!!

My sister Maggie and John walked in as this 5 people restaining scenario played on The doctor gave her Ativan instead of the other medication. This calmed her and got her to finally go to sleep.

Come to find out … there was one hospital that I will call Hosptial M had agreed to take Keri. I filled out the paper work to have Keri transported. 

I will write more tomorrow since it is 3 am. And a kind nurse just brought in a stretcher in for me to sleep on. Trying to sleep sitting up right in 2 chairs pushed together is uncomfortable to the highesr degree.

DIAGNOSIS UNAWARE!!!

image

Keri has been going to the same facility for about 3 years now to see a psychologist for medication management. Keri was officially  diagnosed with Autism in 2011 on her 6th birthday. (We knew the diagnosis beforehand through early intervention and child find at the age of 4. However, the school district could not give an “offical diagnosis”, but yet could place Keri into an Autism classroom -go figure!) In the fall of 2011, she was also diagnosised with ADHD.

In 2012, she was seen by a neurodelvepmental pediatrician at a different location of the same facility. There I was to follow up on Keri’s diagnosis of Autism one year later, as per the doctor who initially did the diagnosis. (Since we moved to a new state in 2011, we had to find a new neurodevelopmental pediatrician.) This visit was a complete was of time. The doctor spent all of 5 minutes with us. She asked why I made the appointment and I told her to follow up on Keri’s progress as per the previous doctor’s orders. The doctor said I was wasting her time, and that since Keri was being seen by a psychiatrist there was no point in seeing her. From that visit, I was leary about having Keri see any Neurodevelopmental Pediatrician.

However, I did set an appointment with a different Neurodevelopmental Pediatrician at the same location as her psychiatrist. Keri saw Dr. W this past Thursday. Which I will get into more detail  in a moment.

Either way, I have always been aware of my daughter’s diagnosises – Autism, ADHD, possible Mood Disorder-nos (from her hospitalization in 2014 – that Dr. B at the hospital was hesitant to diagnosis because of her Autism and limited speach),  and Expressive and receptive language disorder.

With that being said, regarding Keri’s appointment with Dr. W, overall the visit was good. This doctor spent nearly 2 hours with Keri. Dr. W ruled out dyslexia. She agreed with all of the prior diagnosises.

The one thing that disturbed me about the visit, is that Dr. W showed me the other diagnosises in the system. These extra diagnosises were NEVER discussed with me in the 3 years that Keri has gone to this facility!  Things that may have helped me to understand Keri’s behaviors better.

Intellectual Disability

More Information On Mild Intellectual Disability

This was from 2/2015 and I have never posted yet.

Diagnosis Code 296.7

image

Two weeks ago, Keri scratched her arm up because she did not want to go to sleep. During that same week, she acted up on the bus – she refused to have her sealt belt on. Keri was then climbing all over the seats and hanging upside down – she did this twice. These two times, I was not on the bus, but she was with someone she was familiar with.

Last week, Keri has been a bit off the walls with her behavior. On Monday, she grabbed my upper right arm and squeezed – leaving a nice size bruise on my inner arm. Also, I have a few nice scratches to go along with it. This happened on her bus on the way home from school. Nothing really provoked other then the insistance of getting her ears peirced.

Tuesday morning, she was at her grandfather’s house before school – like every other morning for the past 4 years. She sat on his couch yelling and crying for 40 to 45 mins to “burn the house down” over and over again. (Yikes!!! She has never said that before!) All the while trying to bite her leg – which is another thing she has never done. I walked into this happening. Then she is ok on the bus and had a good day in school.

I called her psychiatrist to scheduled an emergency appointment for this past Wednesday.

The past three weeks, her behavior has been spotty at best. At first, I thought it was partly do to normal preteen/teen defiance, hormones, and the end of the school year. However it is more then that…

Wednesday, I took Keri to her doctor’s appointment. In the car, Keri was calm but kept saying “Burn the house down”. I asked her “Who’s house?” She then said “Granddad’s”. When asked why, Keri responded “Because police are mad!”.

We got to the doctor’s only to hear from the nurse and the doctor “I have never seen her like this.” The doctor also said if her behavior continues like this, then I will need to take Keri and have her hospitalized.

In the mean time, the doctor diagnosised Keri with Bipolar. Keri was prescribed a new medications of tegretol.

image

The pharmacy was unable to fill the new prescription on Wednesday. So Keri had to wait until Thursday to get the new medication.

Thursday, on the bus in the way home, Keri had another hard ride. She started to kick the metal divide and kicked it hard enough to make it pop out. Then she started to scratch and bite me. I had to restrain for the rest of the bus ride.

When we got home, she had the first dose of her new medicine. So far we are now on day 5 of the new meds. It has not helped. She is off in her own little world and seems worse. 

But this new diagnosis helps to explain the highs and lows in her behaviors. It is made more difficult with Keri’s already existing diagnosises of Autism, ADHD, and the mild intellectual disability.

What an Autism Parent wants you to understand

Sometimes people are selfish and cannot think beyond themselves.

However, this way of thinking needs to stop when it comes into the context of parents who have childern with autism.

I do not mean that parents with childern who have autism are selfish.

The way I mean this is that people on the outside of the whole autism household are sometimes selfish and cannot think beyond themselves.

I was recently subjected to such selfishness by my boyfriend’s sister.

This post is to hopefully help those on the outside of the autism household to better understand the workings of an autism household. Also to get these same people to break away from the “me” focused thinking and see beyond themselves.

So let me get down to the story and add some insight…

John’s sister (who I will call Anna) moved back a few years ago with her then husband. At that time, John was still living in his old childhood home. His sister and then husband moved into the same house with John. Anna’s marriage did not work out and they divorced. Her ex-husband moved out and back to whatever state he was from.

Anna quickly met another man (Drew). From there, Drew moved in and Anna got pregnant. Anna had a son named Eddie.

At first Anna was fine with Keri’s autism.  I explained how Keri was and how her behaviors could be. Anna has seen first hand how Keri can be and how I have to handle her meltdowns.

Also once Eddie was born, Anna seemed to get more skittish with having Keri around her son. I understand Anna’s line of thought since my daugher can be violent. So I have made it a point not to bring Keri over if she is having a hard day. But I do this anytime Keri is having a hard day. There have been a number of things that Keri and I were going to do with my boyfriend, or my family, other friends, or just going to the park, store or any other place that have had to be cancelled because of Keri having an overly aggressive and violent day. So Anna is not being singled out in anyway … this is routine for Keri and I.

So to get to the point, Anna is moving out west with her family in the next week or so. John went over there with his daughter  (April) yesterday. He did this so April could see her aunt and cousin before the move. Keri and I were suppose to go too. But some old story, Keri has had an aggressive and violent week. So with the bite marks and bruises on my arms from my daughter, I made the decision not to go.

So since I decided not to go over, Anna told John “I guess Sandy (me) doesn’t care enough to come over and see us before we move”.

That comment is where the selfishness and not seeing beyond one’s self comes into play.

Anna simply does not see beyond herself to understand this fact …

AUTISM AND THE MANY MOODS/ BEHAVIORS DECIDES WHAT MY DAUGHTER AND I CAN DO.

Trust me, I would **LOVE** the ability and freedom of having the choice to go out and do things both as a family, with Keri, with John, or by myself. This is something that people or people with neurotypical childern take for granted.

AGAIN AUTISM DICTATES MY LIFE CHOICES!

This is a list of things that happens regularly in my life that these people need to understand. ..

*Finding a babysitter is extremely hard and costly. I cannot just find some teen ager that is responsible and good with childern. Keri needs someone who understands autism, especially the aggressive and violent tendencies. This person needs to know how to handle her when she gets that way. Hence the specialized care is costly, and I cannot afford it. My sister is exellent with Keri and is the only person who can handle her. So I may get out maybe once a month.

*If Keri is having major difficulties with her behavior, all plans existing or else wise are canceled.  Sorry, but it makes life easier for Keri and myself for her to have her meltsowns in the privacy of our own home. I do not have to worry about what damage Keri may do to someone else’s property or to another person.

*Going anywhere is a challenge – Keri’s mood changes moment from moment. Driving can be a challenge because she has thrown stuff at me and attacked me while driving down the road. She has acted out in stores and out in public. At those times, its easier to stay local.

*These decisions of staying local or cancelling plans has no reflection on how I feel about a person. It is the fact that I am putting my child first, because her needs outweigh anything else in this world.

*I miss out a lot in life because of putting Keri first. I cannot run out with a group of friends for a drink or go see a movie. I cannot go out as a family with John, April, and Keri with out first seeing how Keri is going to be. John and I cannot go out as a couple with out first planning months and months in advance. More often then not, John and April will do things with out us. John will go out with out me. Spontaneously going out is extremely rare. Going anywhere by myself barely ever happens other then quickly going to a local store. But this my life.

*I have many scars, bites, bruises, and scratches on my arms from Keri’s meltdowns.

* My daughter may never do certian things like have a boyfriend, drive, get married, have a job, live on her own let alone be left on her own, go to college – etc.

*I may not sleep very well if Keri decides not to sleep at night.

I am sure I am missing something. However,  you get the idea. My life is hard. I do not want pity. I just want  understanding. I do not want to miss out on life,  I do not want people to think I do not like them and do not want to see them.

Just stop the selfish thinking and look beyond yourself.