Tired (Day 7 post 9)

( Mon morning)

 I’m tired...not Ellie.  Tired of fighting, tired of not being heard.

I have not posted the last few days and this will be a short post because, once again, I am tired.

Ellie’s seizures are under control thankfully.  Except the last 2 nights she has bitten her bottom lip twice each night, this may or may not be a seizure.

Her temperature is still unstable.  

In the mornings her heart rate is still high.

She is still sick.  This may be for 1 of 2 reasons:

#1) she is on the wrong antibiotics so the infection is not being helped as much as it needs to be

#2) the current antibiotics haven’t had enough time to work

They originally only wanted antibiotics for 1 more day.  I fought and they agreed to 3 more days.  

I think she may need a different antibiotic, but they are not buying it.  They said to follow up with her primary care dr.  

I’m tired, I’m done fighting.  We are coming home today.

The ENT resident or fellow or whoever said that her regular ENT would be by sometime today, so we will wait for that and then we will leave.  Her ear was growing normal respiratory flora as well as yeast.  And the hole from her ear tube may have closed now.  

I am hopeful things will clear up at home, but I am not holding my breath that we won’t be back soon.

Much better ( Day 4 Post 8)

( Fri night)

This morning she had 3 seizures.  We gave the vimpat load by IV as well as increase her oral vimpat.

Her eyes were jumpy this morning, it is not really a seizure, I call it “on the verge”.  When her eyes do this she just seems unstable, she will often have seizures when she is on the verge.

By afternoon she was awake and alert.  She was no longer on the verge.  I didn’t see any more seizures for the whole rest of the day.

I saw lots of improvement today and my hope is restored.  The antibiotic and seizure meds must be working.  Thank you for your prayers.

Remember ( Day 4 Post 7)

 I  have been struggling to remember that the seizures are more than likely temporary.  She has an infection which is causing her seizure threshold to be lower.

Every person on the planet has a seizure threshold.  To explain it further, everyone’s brains are capable of having a seizure.  When that seizure threshold is reached, then you have a seizure.  Most people never reach that limit so they never have a seizure.

When you are sick or hormonal or stressed your seizure threshold is lowered.

It is difficult being in the midst of this and seeing her seizures to remember that this is temporary.

I think the same can be said for covid.  It is temporary, but in the midst of it, we forget that this is a temporary situation.

My brain gets carried away with Ellie’s seizures thinking that this could be the end, maybe the seizures will never stop, maybe she will die.  These things are more than likely not the case, but I am struggling to maintain a proper perspective.

Please pray that the antibiotics will work and work quickly.

By the way, the IV that I prayed about last night, it is still working this morning.

Heart Stopping (Day 4 Post 6)

We are in this pattern of; she has seizures, we give her a meds to stop the seizures and it also puts her to sleep.  Then as she wakes up, she starts having seizures again and we start the whole cycle over.

So yesterday ( Thur) starting at 3 pm she started having  a seizure every 20-30 minutes.  This was not enough to trigger the rescue med ( Ativan).  To give the Ativan they typically wait for a single seizure to be over 15 min or a cluster of 3 or more seizures within 15 minutes.

But the hours ticked by and the seizures kept happening every 20-30 minutes.  Around 7:30 pm I started 

asking about maybe giving a rescue med.  I wasn’t ready to pull the trigger, but wanted everyone to start 

thinking about it.

At 8 pm she had a seizure and her monitor said asystole and her heart rate monitor was completely flat.  

Her heart had stopped.  Her heart restarted again on it’s own within about 4 seconds.  But it was scary.

The nurse stayed in the room to check her vitals and see how she was doing.  At 8:20 the same thing happened. The nurse grabbed her wrist and could not feel a pulse.  Once again it only lasted about 4 

seconds and her heart restarted on it’s own.  This was even more scary because now her heart had stopped for 2 seizures in a row.

I said, let’s give the Ativan to stop the seizures and stop this from happening.  The nurse agreed.

The nurse got the Ativan and tried giving it to her through her IV.  Her IV wouldn’t flush.  She worked at it for probably 5 minutes.  She only had the 1 IV.  We were approaching the 20 minute mark and I was 

terrified that she was going to have another seizure and her heart would stop again.

We needed the IV to work.  By the time they called the IV team up to put a new IV in it would be a long time later.  I said a prayer in my head and heart for the IV to work just for this 1 med and then the IV 

could go bad.  

Within 1 minute the IV was working and the nurse gave the med.  My prayer was answered.  It was a 

miracle.

She did not have any more seizures last night.

At 11:30 pm were told they were moving her to a new unit and new room where they could watch her heart more closely.  So we were moved to the surgical unit at Midnight.  

When we got to the new room we were pleasantly surprised with a new remodeled room that was HUGE.  We love it.  We actually have room for her wheelchair and bipap and vest machine and Baer hugger and 

IV pole.  We don’t have to play Tetris with the furniture just to get in the bathroom.  It is probably 6 feet wider and it makes all the difference in the world.

She had one other heart incident last night.  Her heart rate went to 45 for about 4 seconds and then jumped back up to 95.  It was not during a seizure.  Her heart rate will occasionally do this at home.  

This morning she has had 3 seizures ( but no heart stopping thankfully).  She is not awake yet, so we will see what happens when she wakes up.

We decided to up her daily dose of vimpat to 175 mg twice a day and to give her another loading IV dose of the vimpat to get her blood levels up.

The daily dose should take 4-5 days to start working, but the IV loading dose should kick in within a few hours. 

Her blood cultures are negative, her viral panel is negative, her urine is negative.  They are calling this ear infection and bacterial aspiration pneumonia.  Her inflammatory blood markers are up and her temperature is unstable so they definitely think there is infection going on.  Last night her temp was low, this morning it is high.  

Pupils and seizures ( Day 3 Post 5)

( Thur night)

This hospital stay is snowballing way bigger than I anticipated.  I thought we would be in and out in 24 hours. They have started her on Clindamycin antibiotic.  It is IV but also has an oral form we can transition to later on to go home.

She has also started ciprofloxacin ear drops.

Today she has been awake but drugged out.

Her left pupil is blown.  It is way bigger than the right eye.  This is not normal your pupils should be the same size. It indicates there is something wrong/bad going on in the brain.

They were really worried about this and quickly rushed her down to do a head CT and shunt series ( X-ray if head, torso and abdomen) to look at her shunt and tubing.

I was not that worried, this has happened before and it ended up not being a big deal.

Her CT was unchanged and her shunt series was unchanged from Tues when those same tests were done when we first got here.

I did a search on her blog to find out the circumstances surrounding the other times this has happened.

Apr 2017:  both ears draining, congestion, Human Metapneumovirus, increased o2, decreased sodium, decreased calcium, retaining co2, bacteria in urine, lungs collapsed, needed bills 24 hours a day.

Feb 2019:  right ear draining, flu A, h1N1, potassium low, left cheek swollen, raised hives behind left ear, increased HR, increased temp, increased o2 needs, increased secretions.

Both times her pupils have been uneven she had an ear infection as well as a viral infection.

So I asked them to run a viral panel this time (nasal swab).  They said yes and have sent it off.

I also find it interesting that the Feb 2019 incident she had skin changes....hives, swollen eye.

This time she has had a small red mark on her right arm just above the elbow and a small red mark under her right eye.  As well as her stomach around her gtube is swollen.  We cut actually called in wound team and put in a longer gtube today.

She has been junky and needing a little more o2 tonight.  She has a lot of blood tinged secretions she is coughing up.  She also has blood in her stomach contents.  She has had 4 or 5 seizures in the last 2-3 hours.  Not enough for rescue meds, but still a LOT more than I would like to see with so many seizure meds in her system.

Drugged up (Day 3 post 4)

(Thur Morning)

No seizures this AM.  She is awake, but is really loopy and out of it...drugged up.

This is to be expected. Before this hospital stay she was taking 750 mg of keppra a twice a day.  Now she is taking 1000 mg of keppra AND 150 mg of vimpat twice a day.  Seizure meds usually have a side effect of sleepiness, but usually you get used to it and you won’t be as sleepy after awhile.

Her temp was 90 F this AM (super low).  I told them we needed to get a Baer hugger to warm her up.  Like usual the nurses didn’t know what it was or where to get it or how to use it.  Hahahaha.  Since we use it basically every time we are inpatient, I know the ins and outs.

ENT wants us to flush her ear with 1/2 strength white vinegar, but they don’t have it in the hospital, so I ran to the store and bought some.

When I came back they had called a code SEPSIS on her due to her temp.  Grrrr...I swear this happens every time I leave.  Either the nurses do something they haven’t talked to me about or Ellie crashes or something.  I think if I had been here I could have talked them out of it.  But actually I think it turned out well, let me explain.

Sepsis is a whole body blood infection.  You are really sick and can die.  They have certain vital sign parameters and if you are above or below those parameters they call a code sepsis and follow a certain protocol.  The protocol includes drawing blood, checking vitals every fifteen minutes, giving a bolus of fluid through the IV, starting antibiotics and having additional drs and nurses taking care of her and everything is done STAT, which means as soon as possible.

So at first when they were telling me they called a code sepsis I wanted to fight them and talk them off their ledge.  But then they explained that due to her seizures, high heart rate yesterday, low temp today and coughing up blood tinged secretions they wanted to start her on antibiotics.

That is exactly what I wanted, antibiotics.  So I decided it was best to keep my mouth shut and let them do their code sepsis because it would include antibiotics.

Seizure Memes (Day 3 post 3)

Special Needs Parents tend to have a dark sense of humor...we have had to learn to laugh or cry.  I don’t know why in our society it is OK for people in the same boat to poke fun of the disability, but if you are not part of that community ( if you don’t have a disability) then you can’t make jokes.  I am not even saying things should be different, because I am not sure that they should.  I don’t really want non-disabled people making jokes.  But as a special needs Mom, I am allowed to make jokes according to unwritten rules of decorum.   Anyway, that was long and rambly to say...here are some seizure memes.  

Unknown (Day 3 Post 2)

Today is Thursday. 

We gave Ativan yesterday about 11 AM.  Like usual, this stopped the seizures, but also made her go to sleep.

Around 1 or 2 yesterday we gave her a vimpat load.  This was a larger dose of vimpat ( seizure med) by IV.  We wanted to get her vimpat levels up quickly.

By evening she was half awake.  She did have some seizures, but not enough to need a rescue med. (Ativan).

ENT did come by yesterday and they suctioned out her ear.  They said it was thick.  They said they can still see the hole where the tube was and she can see some granulation ( scar) tissue around it.  The fluid does appear to be coming from the hole.

ENT would like her to do a vinegar flush to clean it out ( 1/2 water and 1/2 white vinegar) and then do the eardrops to make sure that the drops are getting where they need to go and not being blocked by gunk.  

They cannot get the vinegar in the hospital, so I am going to drive down to a store and grab some.

She had some junky breathing ( yes this is a medical term....haha) yesterday morning but sounded better by evening.  Her heart rate was also high yesterday morning ( 115-140 instead of her normal 70’s or 80’s). It was down by evening.  She was coughing up blood tinged mucus from her lungs yesterday ( not frank blood, just blood tinged).  We will see how that is today.  These signs make me think she might have some lung involvement ( AKA pneumonia), but her o2 needs have not increased, so that rules that out for now.

She got her normal sleeping pill Wed night, so as far as I know, she slept well and did not seize during the night.

She is not awake yet this morning to know how her seizures are doing.

Status (Day 2 Post 1)

Status in the social media world just means saying something that is going on in your life.  But in the world of seizures STATUS is probably the most scary word other than SUDEP.  

SUDEP stands for Sudden Unexpected Death in Epilepsy and I bet you can guess what that diagnosis means.

Status mean you are having lots of seizures and are having a hard time getting them to stop even with emergency meds called rescue meds.  Usually it means a single seizure lasting more than 5 minutes or at least 2 seizures within a 15 minute time frame.

More on that in a minute.

Ellie has been fighting an ear infection.  It started 3-4 weeks ago.  Her left ear was draining.  I called her Pediatric ENT like I usually do to get ear drops called in.  They will usually do this for me no problem and I don’t even need to come into the clinic.  Well for some reason this time they were being sticky about it.  They said she needed to be seen in clinic before they would do it because she hadn’t been seen for over a year.  I said that was fine, I could come in, but would they please call in an RX in the meantime.  She said no.  She said go to your pediatrician.  I tried calling back later in the day to talk to my normal nurse at the ENT clinic, but got the same lady.  Grrrr...

Anyway, to make a long story short(er), we went in to ENT 2-3 weeks later.  By the time we made it in the drainage had stopped.  We discussed how she has been getting more ear infections lately.  She has had the same set of ear tubes for over 10 years.  We discussed the possibility that the tubes could be holding onto bacteria thus causing recurring ear infections.  He also mentioned that perhaps she didn’t need tubes anymore since it has been 10 years and maybe they were just irritating her and her body was trying to get rid of them.  There could be other reasons that she is getting recurring ear infections, but to rule out the 2 reasons I listed we decided to pull out her tubes right there on the spot.  Some types of tubes you can do this and some you can’t, hers were the type that you can. 

The ENT did see some drainage in the left ear even though it wasn’t actually coming out of her ear for me to see.  So he had us do a course of ear drops (ofloxacin).

At some point during the course of ear drops I started to see drainage from the ear.  As we finished up the ear drops I called the ENT to say that we were still seeing drainage.  He started her on Augmentin as well as had her continue the oflaxacin ear drops for 10 days.

The last few days of antibiotics we were still seeing drainage ( blood tinged) from the ear and she started having seizures. On Monday I called to get back into ENT and made an appointment for Wed ( today).

When she is healthy she has zero seizures.  This is known as “ well-controlled” seizures.  When she is sick or having her period she will have seizures.  To keep her seizures well controlled she takes 750 mg of keppra twice a day.  

On Sat and Sun I saw some seizures so I added an extra seizure med we had on hand called vimpat.  We normally add the vimpat during her periods to help with seizure control.

On Monday her seizures were out of control.  I had to give a rescue med (rectal diastat which is Valium).  This stopped the seizures but also made her go to sleep (which is ok).  

I called her neurologist to see if we could go up on any additional seizure meds while we figure out the ear infection.  She gave me a plan to increase her vimpat over the next few days.  I asked if I could give anymore diastat and she said not for 24 hours.  We also always have a plan that I can give additional keppra as a rescue med as well, so I double checked that I could still do that if needed even though I had given the diastat and she said yes.  

When she woke up Mon night she started having seizures again so I gave the extra vimpat.  It was now bedtime.

In the morning (Tues) when she woke up she was having more seizures.  I was maxed out on rescue meds, there was nothing more I could do at home.

Jason left work and Ellie and I headed to Primary Children’s Emergency Department.

They officially said she was in status.  Not to scare you, but just truthfully, people die from being in status if you can’t get the seizures to stop.  

She was given Ativan ( IV Valium) in the ED.  This knocked her out again  as well as stopping the seizures.

Her shunt looks good, blood looks ok, urine looks ok, lungs look questionable.  She might have pneumonia, they can’t tell.  In the ED they said both ears looked mottled, like they were healing.  They did not see anything alarming in the ears.  

They admitted her to NTU (Neuroscience Trauma Unit).

When she woke up later Tues night she had more seizures so she was given more Ativan.

When she woke up Wed morning (today) There were more seizures and more Ativan.

When the team rounded Wed morning we discussed possible pneumonia etc.  

Once they examined her they said they can see fluid in the left ear.  Thankfully.  This means the ear infection hasn’t gone away.  Answers are ALWAYS better than no answers.

The bad news is augmentin may not work for her anymore.

They have not come up with a plan, but I am assuming a new antibiotic is in her near future.

Bangs

Last year Ellie’s hair starting breaking off around her face.  I went to multiple specialists and we did multiple bloodwork to try and find the reason.  The only thing we came up with was that a year ago in February she had been hospitalized.  So perhaps the trauma that her body went through caused her hair to break off.

Anyway, it has started growing back in, and was about the length of bangs ( but The short part was only on the side of her temple.  Today I decided to cut her some bangs.

Before bangs...you can see the breakage/new growth on her left temple ( right side of photo)

 Amount we cut off 

With her new bangs!

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.