Ellie's new IEP Goals for the next year

I don't share alot of Ellie's progress and personal life.  Maybe I should?  Who knows?

At least once a year we get together with her teacher and support specialists to go over her progress and set new goals for the upcoming year.  This is called her IEP.

Her IEP team is large, it includes Ellie, Mom, Dad, Special Ed Teacher, Regular Ed Teacher, Administrator, Intervenor (1 on 1 communication specialist/Aide), Deaf-Blind Consultant, Blind Specialist, Speech Therapist, Occupational Therapist, Physical Therapist. 

We have a lot of opinions and a lot of cooks in the kitchen.  Read this post to see how I make IEP's successful for us.

I decided to share a summary of Ellie's goals for this next year, mainly so you can see how amazing she is.  She is graduating and will be attending a post-high program for the next few years.  In post-high you work on life skills and job skills more than educational skills.

She always has A LOT of goals and works REALLY hard in school.  We are able to work on a lot of goals because she has a 1 on 1 Intervenor (Communication aide).

Vision goal:  Visually look at the person for 2 seconds when having a conversation together (She is currently at 0.5 seconds)

Communication/Speech goal:  When someone starts a conversation with Ellie she will choose statements or questions to respond with using a switch (She currently uses a switch to have a scripted conversation with someone, this new goal will allow her to choose her own responses).

Communication/Speech goal:  Use 2 switches.  1 to advance to the next choice and 1 to choose.  (She currently can use 1 switch with auto-scan.  Auto-scan means the device advances for her and she just chooses when it gets to what she wants).

Money Goal:  Learn to identify money, match money with the correct value, count by 5's to 100, count like money.  (She can already count to 30 by 1's and to 100 by 10's...not money just counting)

Orientation and Mobility Goal (Getting around when blind):  Choose a location she wants to go, identify the correct bus to get there, choose an item, purchase the item, also learn to use handi-trans.

Reading goal:  Using a 3rd grade reading level she will work on sequencing events, identifying details, draw conclusions and predict outcomes.  When she masters those, then she will move on to a 4th grade reading level.  (She can currently listen to a 3rd grade reading level and answer comprehensive questions)

Reading goal:  Increase reading functional sight words to 30 words.  functional sight words are words she might encounter in everyday life such as poison, danger, stop, etc.  (She can currently read 17 functional sight words and she can read an additional 60+ other words).

Physical Therapy Goal (Lower extremeties):  Actively use legs to activate a switch or to push a swing (She does not currently use her legs at all)

Physical Therapy (Vestibular Motion):  Increase time spent in her swing to 60 minutes per week.  (She currently spends about 20 minutes per week in the swing)

Physical Therapy (Standing):  Increase time in the stander to 60 minutes per day.  (We just got her new stander about 6 weeks ago, we are up to 19 minutes at a time).

Physical Therapy (Rolling):  Work on rolling from side to back.  (She cannot currently roll at all.  She has shown improvement in rolling over the last year, we will continue to work on it.)

Occupational/Physical Therapy:  Stretching upper and lower extremities

Occupational Therapy:  Immediately following passive range of motion (someone stretching her) she will do a functional task such as reaching, grasping, etc.

Occupational Therapy:  Manipulate ipad with her hands (not a switch) and view what is happening on the ipad on a separate screen.

Occupational Therapy:  Explore various textures with hands (She hates this and always has.)

Jiggety Jig (Post 5 day 4)

Today is Saturday 4/18/20

Summary:
We came home yesterday afternoon.

Details:
Looking back at different hospital stays these are the different ways I feel when leaving the hospital
#1)  Sick of hospital, get me out no matter what, I don't even care if we are on the mend
#2) So grateful we are getting better and have answers and a good plan moving forward
#3)  Feel pushed out the door, no real answers, no good plan, no one listened to Mom, it was not a team decision

So leaving the hospital yesterday was definitely a #3.

As I pulled away from the hospital yesterday I started crying.  My only solice was my plan to stop at the Centerville Chik Fil A and get a LARGE FROZEN LEMONADE.  Have you had one?  They can basically fix all of life's problems.

Yes her seizures had stopped.  But she was completely stoned from the seizure meds.  She was just staring off with glazed over eyes.  The color in her face and lips was really pale and she just looked terrible.

No one asked me how I felt about her coming home.  No one asked how her temperament/demeanor was.  I was super frustrated.  But at the same time really grateful to get away from my toxic incompetent hospital team.

To clarify...I am not blaming the Dr.'s for the situation.  I am just as much to blame.  I am not good at communicating.  But as a team of Dr's and Mom together we were a toxic and incompetent team.  It was not a good match.

Anyway, on to today.  I am feeling better about the situation.

They wanted me to continue giving her the high doses of seizure meds until I can get an appointment with her regular neurologist next week.  So in the last week we have gone from her normal dose of 500 mg of keppra (seizure med) twice a day to now we are giving 1000 mg keppra twice a day as well as 50 mg vimpat twice a day.

It is a lot.  It is more than double her normal dose.  It is making her very sleepy.

In good news her color looks better today and I have gotten a few smiles.

We never came up with a good reason why she was struggling.  Her blood still looked like she had a virus, but we could not pinpoint where or what the virus was.  It coiuld defineitely still be a virus, but there are only a limited number that they test for.

Also the c-diff came back negative.  I could not convince them to run any additional stool tests like rotovirus, etc...

Her left lower lung still sounds diminished (not moving great air) so there could be something viral there as well.

We are grateful to be home.  Overall she is doing well, other than being drugged up.

Please ignore the typos...my touch pad on my chromebook is not working very well.

Resident (Post 4 Day 3)

This resident is going to be the death of me.  (exaggeration)

They just did her physical less than an hour ago.

The lowest resident comes in and says she had an automatic sepsis alert so she has to do a physical.

This is ridiculous.  Sepsis means a major systemic (whole body/blood) infection.  It means a lot of your vitals are out of whack and action needs to be taken quickly.  People die from sepsis...trust me...I get it.  Sepsis is serious.

Here is where the funny/frustrating/crazy part is...

Her normal temp falls in the sepsis category.  Usually they just put a note in the system that says this is normal for her.

When the automatic sepsis alert came through it was because her HR was high.  Well guess what?  She was in the middle of a vibrating vest breathing treatment.  #1) the vibrating will agitate you and raise your heartrate and #2) the HR readings are not accurate during the vest because you are vibrating.

So yeah her HR was 216...during the vest.

Seriously.  Look at what is going on and tell the automatic system to buzz off.

But instead she says, I just have to do it since it gave the alarm.  No you don't.  You are smarter than a computer.

Ahhhh......

Whatever.

Fight, Fight, Fight (Post 3 Day 3)

Summary for those who don't want to read the whole thing...
Got temp back to normal.  Mom fights with residents.  Going to run a c-diff test (stool sample...c-diff is when all your good bacteria in your gut gets killed by antibiotics and the bad bacteria takes over.)  Starting to wake up.  Still no seizures.

Details...

You know how people have flight, flight or freeze?

I don't.

I have fight, fight, fight.

No flight.

No freeze.

Seriously.  My brain is wired this way.  I don't like it.  And it is something I am always working on.  But a lot of times this is what happens with me and my interactions with humans/life.

It is frustrating for me that I can't treat people respectfully and have patience and know when to bite my tongue.

Anyway, I lost it with the residents today.  Not like yelling at them, but I acted more forceful than I would have liked.

I don't like residents in general.  They are not good for my emotional state.  In general they are arrogant and don't know how to listen.  It sounds a lot like me.  Which is probably why I don't like them.

Anyway.  I have had a few run-ins in the last 3 days with the lowest resident taking care of Ellie.  Basically #1)She tried telling me that the seizures were a progression of her disease (epilepsy) completely ignoring the fact that she has inflammation markers in her blood indicating an infection and that she has had a fever.  #2) The nurse and I had a miscommunication yesterday about who was cathing her (me or her).  So the resident this morning tried giving me a lecture on how important it is to cath her.  Like seriously...I'm the one who told you guys we need to cath her.  How inexperienced do you think I am?

So then what happened this morning was...the lowest resident tried saying basically...her vitals are looking improved.  We haven't seen any seizures.  We want you to go home on these high levels of seizure meds and wean them at home.

I am so frustrated that they keep ignoring the fact that there is something underlying going on here.

We don't know what her vitals are right now because she is totally snowed.

We don't know what her seizures are like right now because she is totally snowed.

I feel like this is what happened last year when she has nose bleeds after being nasally intubated for surgery.  They were like...the nose bleed stopped so go home.  So we did and then she started bleeding so badly that it was scary emergency coming back in she needed 2 blood transfusions to take care of the amount of blood she lost.

(Back to the current situation) I said that due to her diarrhea I wanted to run a c-diff test.  C-diff is when antibiotics kill all the good bacteria in your gut and the bad bacteria takes over.

The higher up resident (not the one that I have had the 2 previous run-ins with) gave me some story of...we can't run a c-diff test because she has had senna.

I basically ripped him one and said.  There is no way that this can be true.  You are telling me that because she normally gets meds to help her poop that they would never do a cdiff test on her?  That cannot possibly be accurate.  She normally gets meds to help her poop (a lot of them).  But her BM consistency has changed.  The meds haven't changed.  In fact we have held some of her poop meds.  And she still has diarrhea.  I also pointed out that there was a clear correlation between her taking augmentin and the diarrhea starting.  It seemed completely reasonable to run a c-diff test.  I said blatantly...FIGURE OUT A WAY.  And the conversation was done.

I guess the thing that is frustrating to me is the attending is just standing there and does absolutely nothing.  He doesn't say a word.  Literally.  Give some input.  Pick a side.  Make a comment.  Anything.

All that being said.  We are doing a c-diff test.  I wish I could feel like it was a "win".  But it just feels contentious and awkward.  It would be a win if we could all be on the same page.

It takes a few hours to get the c-diff results back.

I think we will probably go home today or at the latest tomorrow.

9:15 AM

Temp is up to 95.5 F normal for her.  Yea!

She is starting to wake up.  We have not seen any seizures.

Cold (post 2, day 3)

Summary for those who don't want to read the whole post...
She woke up very cold.  We have not seen seizures.  But she is not awake.  There are probably still alot of rescue seizure meds in her system.  We won't know how her seizures are doing until those meds get out of her system.  Coronavirus came back negative.

Now for the details...
Fri 4.17.2020 @ 8 AM  Day 3 in the hospital
Man I hate being in the hospital.  At home her pulse ox that measures her HR and O2 have certain specified parameters and will beep loudly to call me in if she exceeds the parameters.  This allows me to know when something is going on when I am not in the room with her. 

Her HR and temp are best friends.  So when her HR is below 60 I know without even taking her temp that she is cold and I need to start working on it.  If it gets below 50 I know she is freezing and it is much more urgent that I need to be actively working quickly to warm her up.

The hospital automatically has different parameters set on her vitals and there are no alarms within the room.  I forgot to tell them to reset the parameters to her home settings, to turn on alarms in the room and I forgot to tell them if her HR is below 60 that they need to check her temp.  So yes, it is my mistake.

Anyway, I woke up this morning at 6:30ish and her HR was 48.  Nothing was being done.  No temperature was being taken.  No one was trying to warm her up.  Yes, once again it was my fault.  But it send me into a panic.

Her normal temp is low...93 F to 95.5 F.  That is where we want her. 

Normal thermometers only go down to about 93 or 92 F.

The one I use goes down to 90 F.

So when I saw her HR was 48 this morning, I took her temp and the thermometer wouldn't even read.  It just says L for Low.  This means her temp was below 90 F.

This happens to Ellie.  I don't like it.  But it happens.  But normally if I have my parameters and alarms I can catch her on the downward trend and catch her before it gets critical.

I put her electric blanket on for an hour with a bunch more blankets and pillow piled on top.  I told the nurse that we needed a baer hugger. 

I love the baer hugger.  I wish I could get one for home.  But only medical facilities can buy them.  It is like a blanket with holes in it.  It blows warm air into the blanket and the warm air comes out the holes onto the person to warm them up.

I always have to educate the nurses and sometimes the residents about the baer hugger.  They don't know what it is, how to get one, where to get one, how to use one.

So while the nurse worked on getting a baer hugger her hour was up with the electric blanket.  I retook her temp. This time at least the thermometer would read.  It was 90.3 F.

I restarted the electric blanket timer for another hour.  About halfway through this cycle (so 1.5 hours of using the electric blanket) the nurse brought in the baer hugger.

I took her temp and it was 92.8 F.  So it was coming up slowly.

8:15 AM
She has the baer hugger running on high for 20 min.

The nurse said looking at her night-time trends her HR has been about 50 since about 5 AM.  Grrrrr....mad at myself.  She has been freezing for several hours and I did nothing about it.  Getting cold and getting warmed up take a lot out of her physically.  It is best to keep her right in her happy zone.  We don't need more stress on her body or brain right now.

I had the nurse fix her alarms and parameters and talked to her about checking her temp if her HR gets below 60.

I had to bump her respiratory treatments until we get her temp up.

OK..enough self-loathing.  Moving on.

I have not seen any seizures during the night or today.  She is still totally asleep even though she has had her ritalin (a med she takes to help her with her alertness).  She probably still has a lot of rescue seizure meds in her system that are still making her sleepy.  We really won't know how her seizures are doing until she wakes up and the extra seizure meds wear off.

8:30 AM
Her 20 minutes of Baer hugger are done.  She is at 93.5 F.  I like her to get to 94 F before stopping warming her up.  If we go above that she keeps trending up and will end up too hot.

We will give her a 20 min break and then do another 20 min on the baer hugger.

Coronavirus came back negative as I suspected.  She has virtually 0 exposure.  We would still like prayers that she doesn't catch it in the hospital.

In other news...I normally only bring 1 spare set of clothes and underwear and 1 PJ's when she in inpatient and I do not leave.  So that is what I brought this time as well. Normally I can use the laundry facilities and wash my clothes each day.  Well, I have been quarantined to her room, so I was out of clothes.  So last night I washed them with shampoo and hung them to dry...hahahahaha. 

Seizures

A few weeks ago Ellie had her left ear draining as well as a fever and chest congestion.  I also thought she might have strep since her voice was hoarse. 

I did not want to take her to the Dr. for fear of getting Coronavirus.  I spoke with her Dr. on the phone and we treated with Augmentin antibiotic and ofloxacin ear drops.

Her ear did not stop draining until day 9 out of 10, which seems unusual.

She continued to have congested lungs over the next week and started having increased amount of seizures as well as a rash on the side of her left breast and her left forearm.

I treated the rash with benedryl and hydrocortisone, which did not seem to help.

When she is healthy she has zero seizures, but when she is sick or hormonal she has seizures.

I had a telemedicine appointment with her neurologist and we decided to increase her daily seizure med.

I also did a telemedicine appointment with her Dr. and told her about a rash she called in an anti-fungal topical cream.

The increase in seizure med did not help her seizures and in fact her seizures increased (not due to the medicine).

Tues she was having lots and lots of seizures.

Wed morning she had a fever.  I decided I needed to watch her more closely and track her seizures.  I realized they were coming every 5 minutes.  I needed to give her emergency seizure meds.  Our first line of defense is to give a 2nd dose of her normal seizure med (Keppra).  This did not stop the seizures.  Our 2nd line of defense is diastat (rectal valium), which I gave. This usually knocks her out for 12-24 hours.

The seizures did slow and then stop with the diastat.  But only for about 1.5-2 hours.  At which point they started back at about every 15 minutes and then started increasing even more than that.

It was time to take her to the hospital.  We did not want to because we are terrified of catching Covid in the hospital.  At home we can control things and be super careful, but the hospital is just germy.

But we were out of options.  So I packed some things for Ellie and myself and waited for Dad to get home.  Ace and Jason gave her a priesthood blessing and off we went to Primary Children's Emergency Department.

They ran nasal swab (Viral Respiratory Panel as well as Coronavirus test), urine to look for UTI, bloodwork to look for signs of infection, xray to look at lungs for pneumonia and look at her shunt and CT to look at her shunt.

They gave her phosphenytoin through her IV to try and stop the seizures.  And decided to admit us to the floor (not ICU).

Now it is the next day (Thursday).  VRP was negative.  VRP checks for the 20something most common viruses.  It does not check for all viruses.

Coronavirus is still pending.

Bloodwork shows levels of inflammation consistent with a viral something going on, but nothing crazy.

CT had not changed.

Xray had not changed.

Urine was clean.

Left lung sounds diminished (not moving as good of air), so there could be something viral going on there.

Viruses cannot be treated with antibiotics.  You just have to support the person until their body can fight it off.  By support I mean oxygen, breathing treatments, pressure support (bipap or intubation), etc.

Her oxygen sats are fantastic.

Basically we still have no answers.

We are still waiting on coronavirus results.  Until we get them I am quarantined to Ellie's room with her.  I cannot even go get food in the cafeteria.  I can order food over the phone and pay for it over the phone and they will bring it to her room within 90 minutes.  Thankfully her room has a toilet and shower.

She is on a pod all to herself and there is not even anyone in the next pod over.  So she has her nurse all to herself.

The RT's here at Primary's have said they do not have many respiratory patients here right now.

Her room is a positive pressure room, so we are not sharing an HVAC with any of the rest of the hospital.

The RT's are wearing something called a PAPR.  Click here to see a photo of it.

Every person who enters the hospital has their temperature taken, is given a mask and must put on hand sanitizer.

For ED only 1 parent is allowed.  The other parent cannot even be in the waiting room. 

Once you are inpatient they are only allowed 2 visitors the whole time, the same 2 people.  And you must write it down and choose who the 2 people are from the very beginning of your admit.  So for example, myself (Mom) and Jason (Dad) are the only 2 people who can visit Ellie.  There can only be 1 of us with her at a time and we can only switch once every 24 hours.

Right now it is Thur at 9 PM.  This morning the team gave me the choice of going home and weaning off the additional meds there or staying overnight.

Bouncing back is literally the worst.  It means you have to go through the ED again (which is hours and hours) and you have to bring all your stuff again and you have to explain your story a million more times and emotionally it takes a really huge toll on everyone involved.

So normally I would have said, we want to wait overnight.  But Since I am so scared of the corona I said I need to talk to Jason about it.

Well shortly thereafter she started having seizures basically non-stop.  It was at least 15 minutes straight.  And her seizures are normally under a minute long.

So we needed to give another seizure rescue med (Ativan).  It totally wiped her out.  She has been really sleepy from the meds today.  But the good news is the seizures have stopped.

We won't truly know if the seizures are under control until the rescue meds wear off and she is more alert.

Due to the big seizure and giving another rescue med today, there was no way we could go home today.

I do not think she has covid.  We have been SOOOOOOO careful.  I do not think her seizures are just a progression of her epilepsy (AKA I do not think her seizures all all of a sudden going bonkers).  I do think she has some type of virus or other something going on and therefore she is having a lot more seizures.

I feel like the team is looking so long and hard at the seizures that they are forgetting that she probably has something else going on.

Tomorrow I am going to talk to them about running a stool sample.  This all started with the antibiotic.  And she has been having diarrhea.  So I would like to check for c-diff and rotovirus etc...

We would appreciate prayers to keep Ellie healthy while in the hospital.