Good and bad (Day 3, Post #2)

 Yesterday ( Tuesday)  was a pretty good day.

I asked for a priesthood blessing for Ellie and an employee was able to come do that for her.  It immediately brought the spirit and carried peace to my heart.

We got a goodie bag of things to decorate her room as well as some gifts.  

We had lots of fun decorating her tree and opening her presents.  We painted our nails and got to enjoy her new blanket and new socks.

*****

We had a TON of specialists come in yesterday, I’m not sure I can remember all of them, but I will try.

Speech Therapy- I said we didn’t want services

Occupational Therapy- I said we didn’t want services

Physical Therapy- I said we didn’t want services.

Rainbow Kids- a team of pediatricians, nurses and Social Workers available to help with complex situations like end of life, conflicts with Dr’s, quality vs quantity of life, etc

Child life- brought the goodie bag listed above

Comprehensive Care- Drs and nurses trained to help kids/families that have complex medical needs

The person from finance that gave the beautiful blessing

2 separate visits from hematology/oncology

Pediatric Gynecology

Infectious Disease

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Hematology——-they do not see anything concerning with her blood when they look under microscope. They do not know why the sputum has blood in it.  They do not have an answer as to why her hemoglobin dropped so quickly from Mon night to Tues.

Gynecology——-this is new.  PCH has not previously had a pediatric gynecologist.  Ellie has had her estrogen, bone density and periods managed so far by endocrinology, which is not really their specialty.  So I am so happy that they now have a pediatric gynecologist.  We came up with a new plan to lower blood loss and increase bone health.  We are switching from an oral ( gtube) estrogen to the patch.  It is better for bone health.  For now we are switching types of progesterone to a different oral one and then outpatient we will follow- up and get a mirena  IUD to give ongoing Progesterone.  This will keep the lining of her uterus thin so she won’t have periods.

Infectious Disease——- they started her on avycaz, and unusual IV antibiotic that is a combo of 2 antibiotics.  As well as vancomycin.  They are hopeful once her cultures grow out that they can stop the Vanc.  We will probably have results Thursday the 24th.

*****

Last night ( Tues) during the night even on bipap she was have apnea ( taking no breaths) and then  her heart rate would drop for 90’s immediately into the 50’s.  The team doesn’t seem too worried about it.  I am pretty worried, but it has stopped today, so I guess we are ok.

Resistant (Day 2 post 1)

Summary of post if you don’t want to read the whole thing...Ellie was admitted to Primary Children’s ICU  last night for an antibiotic resistant pneumonia.  She is stable.  She has been started on IV antibiotics.  We are hoping to be home by Christmas.  We would love prayers.

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History for the last few months

She has been fighting a L ear infection for months.  We do ear drops, it clears up, then it returns.

She has been drooling for the last several months.

Her breathing has been junky for the last several months, but she has maintained her oxygen saturation’s the whole time.

She has had blood tinged sputum ( junk coughed up from lungs) for the last few months.  ( more about this below)

Her hands, feet and belly have been swollen/bloated even worse than normal for the last few months.

*****

Things we have tried for the bloody sputum...

Ear drops

In March we had switched from Zantac ( due to it being recalled) to famotadine.  These are reflux meds.  She started bleeding a few months after switching, so we thought it might be reflux making her bleed.  So we doubled her dose of famotadine.  It did not help with the bleeding.

I talked to her pulmonologist about her being more junky and the bloody sputum.  She called in a chest X-ray and wants us to collect a sputum sample.  We started on oral ciprofloxacin ( more on this below).

*****

Results of the chest X-ray/Sputum...

Chest X-ray showed pneumonia in lower right lube ( bottom part of her right lung)

Sputum grew serrations marcescens and rare pseudomonas.  The serrations was susceptible (meaning it would be killed by) to cipro.  The pseudomonas was resistant ( would not be killed by anything) except colistin  out of the antibiotics they tested on it.  

**** 

What we did about the pneumonia

Her pulmonologist felt confident that cipro could take care of the serratia.  Pseudomonas is extremely difficult to eradicate.  Usually you just hope to make it retreat a bit until it comes roaring back.

So we started on oral ( which for Ellie means gtube) ciprofloxacin antibiotics.

*****

Sunday and Monday

Yesterday ( Monday) was day 11 of cipro and day 7 of ear drops.

She had not improved.

Sunday and Monday she was actually worse. She needed 3 liters of o2 up from 1 liter and she still had bloody sputum.  Her lungs sounded more junky.

Sunday her left eye was dilated.

Sunday and Monday she woke up and her left eye was swollen.

She was super snotty ( upper airway).

She normally gets a vibrating vest and 2 inhaled meds to keep her lungs clear.  On Sunday and Monday I increased her breathing treatments to 4x per day.

I called pulmonology and asked if there was anything else we could do at home.  She said no, we should go to Primary Children’s Emergency Room.

****

She was not in a super dangerous place, so Monday we waited until Jason got home from work before I (Mikael) drove her to PCH Emergency Department.

In the ED they ran blood, blood cultures, urine, urine cultures, chest X-ray, abdominal X-ray, covid, snot.

*****

Test results

No covid.  No virus ( out of the ones they check for).

Chest X-ray looked unchanged from 2 weeks ago...still had pneumonia.

Her hemoglobin was low, but not quite low enough for a transfusion, but almost.

Co2 was high.  So she was not breathing out all of the co2 that she should.

***** 

actions taken after test results

They put her on her bipap to help blow off the co2.  Anytime you are on a different bipap setting or time frame you have to be in the ICU.  So since they put her bipap on before bedtime, she needed to go to ICU.

Her temp also dropped to 89 F while in the ED, so we took a few hours to get her warmed up with the bear hugger and warmed IV fluids.

Admitted to ICU.  Got into a room at 1 AM.

*****

How the night went

She was stable all night.

She dropped o2 sats into the 70’s a few times.  But after being suctioned her sats came back up.

*****

The plan

Her previous sputum was resistant to everything but colistin.  We have been in this situation before several years ago,  another time that pseudomonas reared it’s ugly head.  The dr’s several years ago said colistin was too dangerous.  So several years ago we used avycaz .  It is an uncommon combo of 2 IV antibiotics.

The ICU dr’s can only prescribe the common antibiotics, once they get resistant bugs, they have to call in Infectious Disease ( ID).  I jokingly call them the CDA ( from Monsters Inc).

Overnight they were able to get in touch with ID.  ID wanted to do avycaz and vancomycin.  So those are already started this morning.  I am surprised how quickly that happened.

*****

Tests run today

Hemoglobin was even lower today than last night and hematocrit was low as well.  So she got a unit of blood ( blood transfusion) this morning.

Another sputum sample.

*****

New symptom

Her palms are red and dry this morning.  Possible reaction to blood or antibiotics????

******

Overall

Overall she is doing good.  Fairly stable.  We are hoping to make it home by Christmas, please include Ellie and her Dr’s in your prayers.

*****

Younger sister must have missed us, she slept in Ellie’s bed with Mom’s blanket.  

( or she wanted a room to herself instead of sharing with 2 sisters...hahahaha)

Home (Day 8 Post 10)

 (Update for Monday)

Another long day.

She was still having high temps and high heartrate as well as several episodes of biting her bottom lip (possible seizure?!?!?!?).

We got a new Dr. Mon morn.  They had a totally different take on the plan of action.  I just wanted to go home and wasn't willing to fight them on it.  I said I wanted to go home.  We agreed on being discharged.

ENT said they were coming by, so we waited half the day for them to come.

Then she started rolling her eyes up into her head, we didn't know if it was a seizure.  They wanted to do an EEG.  I said we have never gotten any information from EEG because her brain activity is always abnormal.  So if you compare a new abnormal EEG to an old abnormal EEG you get no info.  They said they would definitely be able to get information from it.  I said they were blowing smoke, but sure, go ahead and run it.

When the EEG was done they said "we don't see any new seizure activity", which I think was their way of saying it is an abnormal EEG and we can't get any information from it...hahahahaha.

Then I wanted to clean out the EEG gunk from her hair at the hospital where I had help and didn't care if it made a mess pouring water on her head.

By the time we finally left the hospital it was around 5ish (I can't even remember...it is a blur).

Ellie smiled a few times on the way home.

My back was out for 2 weeks before going in the hospital (I had been going to the chiro and getting massages etc) and then a week sleeping on a hospital bed didn't help.  It was really really nice to sleep in my own bed last night.

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Update for Tues (Today.... at home)

HR got a little high during the night as well as another biting her bottom lip once during the night.

Overall she is doing well.

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!