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.

Home

We made it home.

Beat up

Last night her temperature was very cold.  Thankfully we were in ICU where they have immediate access to the Baer hugger to warm her up.  When she gets cold on other units it is a big production and usually a fight to get a Baer hugger.  We will be watching her temperature for signs of infection.

Ellie spent the night in ICU again.

This morning I woke up to Ellie coughing a junky cough.  I hopped out of bed to suction her.  I put the suction cath through her mouth to the back of her throat and she coughed again and it was a quite a bit of bright red blood.  The nurse was not in the room.  She looked at the suction tubing later and saw old blood stuck inside the tube.  When I tried telling the Dr.'s about the bright red blood she counteracted me and said it was old blood (dark red instead of bright red).  I know the difference.  We are watching to see if there is any more blood.

Her hemoglobin was low so they gave her a blood transfusion today.  Probably due to how much blood she lost with the nose bleeds the day before.  It was a lot!  It was like a murder scene...blood everywhere.

They pulled out the packing from the 2nd nostril.  So she was able to restart the nasal cannula with humidity today.  SHe has been satting high 90's on only 1/2 liter (which is what she has been on at home)

She is back up to full feeds.

Her mouth, lips and tongue are really swollen from the trauma caused by suctioning/pulling out the blood clots on Thursday.

Her left eye is really swollen from the IV fluids and she keep her head to the left.

The Dr. came and cut her casts open yesterday (Fri) to allow for swelling and that was a good move, her feet feel like a better temperature today.

Today has been calm.

We will be moving to the floor soon (out of ICU) and possibly/probably home tomorrow.

I am not sure if she will start school on Monday.  Her face looks pretty beat up.

She has only needed Tylenol for pain

Lungs sound good so far. 

The rodeo chair that Jason brought from home will work great at supporting her legs in casts.

I tried to be extra nice to the nurses and Dr.'s today....I think it came across as being nonchalant instead of kind.  However, I don't think I made anyone cry today.  (Except Ellie with suctioning....hahahaha).

"Outpatient" surgery

Ellie had surgery yesterday.  It was to lengthen her hamstrings so she could stand in a stander again.  The last few years she has not been able to stand in a stander because her legs have gotten too tight.

A stander looks like a torture device that you strap a person into.  Then you raise the device to be vertical and wah-lah now the person who is strapped in is standing and weight-bearing.

Standing is SUPER IMPORTANT.  It helps bones, joints, breathing, circulation, digestion, etc...

I was told it was a super easy, super fast surgery.  I asked if they thought she would be able to start school next week and they said yes.  It was scheduled to be outpatient (come home the same day).

When I talked to the Dr. right before she went into the OR, I found out she would have casts on both legs to keep them straight for 6 weeks.  I did not know about the casts before this point.

Surgery went well.

She also had dental cleanings and xrays in the OR.

While in post-op I mentioned to the nurse that I didn't know how I was going to get Ellie home because her wheelchair footrests do not extend out straight.  We spent a few hours trying to figure things out.

Normally her wheelchair pushes up against the backs of the 2 front seats, so not only is there nothing to support her legs, but there is not room for her to extend her legs.  The plan we decided on was to pull out the front passenger seat of my minivan and somehow store it at someone's house here in SLC for a few days until we could come back and get it.  We thought we could then use a cardboard box for her feet with some pillows on it.

As we were working out the details of this plan, Ellie started bleeding from her nostril.  Then it became blood from both nostrils.  She had been intubated through her nose so they could do the dental cleanings.

We tried various things to stop the blood.  It did not stop.  Finally they called in ENT.  They looked in her nostrils to try and find the source of the bleeding.  They could not locate it. 

ENT very gruesomely pulled out ENORMOUS BLOOD CLOTS from the back of her throat.  They were almost as big as her tongue and there were TONS of them.  I can handle a lot of medical things that don't gross me out, but this was DISGUSTING.  There was blood everywhere.  It was scary and not good.  There was a lot of trauma (damage) to her tongue and lips and arched palette , etc trying to get these blood clots out.

They put a tampon type device up each nostril to try and stop the bleeding.

They did blood-work to see if there was a reason she was bleeding sooooooo much.  Her labs were fine.

We got her admitted to the ICU.  

I fought the ICU Dr's for a few hours to try and NOT do the bipap for 1 night.  I did not want to push all of that blood down in her lungs with the bipap and then she gets pneumonia AGAIN!

They agreed to hold off on deciding about bipap until we had done her night breathing treatments and a chest xray to see if they could see an obvious pneumonia (blood) in her lungs.  They did not see anything bad on xray---just her normal bad---but nothing new bad.

She was snorting and working hard to breathe but was maintaining her sats.  She is a nose breather.  It is hard for her to breathe through her nose.  And now both nostrils had tampons shoved up them. 

Because she was maintaining her sats and her xray looked OK the Dr.'s agreed to hold off on bipap.

After she fell asleep her apna was too bad.  I was having to stand there and startle her awake every few seconds to get her to take a breath (she was forgetting to breathe....Apnea).

I said call the Dr. and tell them I am ready to do bipap.  Which we did.

Both of us had been up since 3 AM to get here for surgery on time.  We got to bed at 1 AM.  (Keep in mind she got out of surgery at 9:30 AM and got to ICU at 8:30 PM then to bed at 1 AM).  It was a long and unexpected day.

She had a terrible night.  Lots of desats.

Today (Friday 8/16/19) they pulled out 1 of the tampons.  And we have not had any additional bleeding.  She has been on blow-by O2 all day and doing much better.  She is breathing much more easily.  She has had several daytime desats, but still doing good.

Her mouth and tongue are super swollen.  Her feet are super swollen, so we were worried about swelling inside the cast.  The Orthopedic surgery Dr. cut the casts open and then wrapped them with coban.

Her pain has been minimal.

Although her regular wheelchair does not have a footrest that will adjust, we have a "Rodeo Tilt" stroller that the footrest will extend.  And thankfully it has tie-downs on it as well to strap into the car.  So Jason brought that down today so we will be able to get her home.

We may go home as soon as tomorrow.  But I am not holding my breath.  For tonight we stay in ICU.

We all believe her desats are caused by lots of swelling in the throat and nose.

She did have blood in her stomach contents today so we are also assuming she has blood in her lungs, but sometimes the lungs can absorb blood and it will be OK.  We will have to see.

She is still unable to use the nasal cannula since she still has a tampon up one nostril.

Overall doing OK today.

On another note.  They sent a social worker to me this morning to tell me that I made a nurse cry yesterday and I was being rude and hostile to the nurses.  I said I was sorry, that was never my intent. 

I wish I could figure out how to stand up for Ellie without being rude to other people.  It is something that I definitely have not mastered yet.

I need an interpreter for my lack of social skills.  I could tell the interpreter what I wanted to tell the person and they could rephrase it in a nice way and a kind tone of voice.  Do you think the hospital can provide me with one of those type of interpreters?

Perhaps I am overly tired?  Perhaps I don't know how to deal with stress?  Perhaps the hospital causes me to have PTSD? 

Probably all of the above.  The struggle is real!

We are home---Wed 3/6/19 @ 10 PM---(Post #55)

We got discharged today.  Th Dr. told us we could go home at about 9 AM.  We left the hospital at 4:45 PM...I am NOT kidding.   SOOOOOOOOO SLOW!!!!!!

Anyway, then of course we were hitting rush hour traffic and I was so tired.  I tried to pull off once to take a little nap, but then I woke up before pulling over, but I had already gotten off the highway, so I just kept driving and took a little detour...hahaha.

I made it home at 6:03 PM.

The delivery driver was meeting me at home at 6 PM with her IV antibiotics.

She was due to have her next dose of IV antibiotic at 6 PM.

So we hurried and called the homecare nurse to come get us set up and finish teaching us.  (We have done the PICC and IV antibiotics at home twice before...but it has been a few years so we needed a refresher course).

I asked Jason afterwards if he (the nurse) was the worst teacher ever or if I was just grumpy.  He said he wasn't a great teacher, but I was also grumpy....hahaha.  I'm sticking with my..."he seemed like the worst teacher ever."  Good thing we both mostly knew how to do IV's anyway, otherwise we would have no idea what we were doing if it was only based on his teaching.

We only need to do the IV antibiotic Thur and Fri and then she will have completed her 3 week course.  Infectious Disease is confident that 3 weeks will kill the Superbug.  (Especially after seeing how good her CRP --level of inflammation---has been the last week or so.)

So we can pull out her PICC in 2 days.  I'm sure I could do it myself, but they are going to send Homecare out to do it.  That's fine.

Before we came home Jason sanitized every surface in Ellie's room.

After I got home we threw away any medical things we could from her room.  Suction canister and tubing, bipap tubing, nebulizer tubing, nebulizer cups, nebulizer masks, nasal cannula, etc.  And we replaced it with all new stuff.  Good thing I'm a hoarder...I mean boy scout...I had enough of everything on hand without ordering anything new.

I am sooooooooooo tired.  Emotionally tired.  But glad to be home.

Desats---Tues 3/5/19 @ 3:30 PM--- (Post # 54)

3:30 PM
She had multiple desats last night, only into the high 80's, but still.  I'm not sure if it was due to an inexperienced RT that didn't know how to suction very well?!?!?!  Perhaps.

Today her breathing sounds slightly obstructed to me, kind of like snoring.

But she is doing well.

She has been on the nasal cannula all day so far and is back on her normal night time settings.

Today we lowered her breathing treatments to 3 times a day during daytime hours.  She can have a middle of the night treatment if she needs it, but it is not scheduled.

At this point I just want to ignore all the weird things I am still worried about, like elevated temp, desats, obstructed breathing etc.  I just want to go home.

Right now her temperature is actually low (even for her) 90.9 F.  Going super cold is actually more normal for her.  We are working on warming her up right now with warm blankets (which won't work, but are better than nothing) while the nurse gets orders from the Dr. for the Baer Hugger.

The Dr.'s are still checking to see if we can get both the Tobi and the Avycaz at home or if we need to stay through the 8th for those.

4 PM
The resident is giving me grief over asking for the baer hugger.  He is telling the nurse he wants to try ...
#1) Warm blankets...which are not warm enough to work on Ellie.  About 5-7 years ago the hospital made a new "safety rule" and lowered all of the temperatures of the blanket warmers...they are pointless for Ellie now.  By the time they get them out of the warmer and to the patient they are barely warm.  And against Ellie's cold body they are not aggressive enough.  I tease that she is like a lizard and has to get her body heat from outside sources like a lizard laying on a warm rock.  PS, if anyone sees a warm rock, please send it our way!
#2) He wants to do a rectal temp.  I should probably just agree so that he can see...duh...she's cold she needs the baer hugger.  But instead I feel like...HELLO!  What have I been telling you is her normal?  I tried very clearly stating to the Dr yesterday that to maintain her "normal" temps she has sweats and long sleeves on all the time, a warm blanket ALL the time and an electric blanket multiple times per day.  THIS IS NORMAL!  We don't need to be shoving something into my 16 YO daughters bum.  Trust the Mom!  Get me the Baer Hugger!  Anyway...I very calmly told the nurse that I would like to speak to the resident.  She said OK.

We NEVER EVER have a hospital stay were we do not need the Baer Hugger.

Medical Memes

Honorary RT degree--Monday night 11 PM-- (Post # 53)

Question:  How many RT's (Respiratory Therapists) does it take to solve an alarm on a bipap machine? 
Answer:  More than 4, but we will never know, because Mom solved it...hahaha

#1 RT set up the machine with her settings this afternoon
#2 RT must be new because when she came in to put her bipap mask on for the night she brought...
#3 RT another RT with her
#4 RT was called in by #2 and #3

There was an alarm going off on the bipap machine (Trilogy) that was saying "low minute ventilation".  They looked all over her mask and tubing and machine and settings and couldn't find anything wrong.  They looked and looked for about 15 minutes.

They sent one of the RT's off to get new tubing.

I hopped on google for about 60 seconds pulled up the trilogy manual PDF and read them what it said about low minute ventilation.

The 2 RT's in the room said we already looked at that (the exhalation port on her mask). 

I knew where her exhalation port was on her mask, but other than that I didn't know what I was doing.  I walked over to her, pulled the exhalation port off her mask, wiggled it around and stuck it back on the mask. 

Immediately the alarms stopped.

The 2 RT's stood around dumbfounded...hahahaha.  It was hilarious. 

They didn't say a word to me.

Then the 1 RT that was sent for tubing came back and the 2 RT's told him "WE fixed it."  They didn't mention me at all.   hahahahaha

Since no one has given me an honorary nursing degree, can someone please give me an honorary Respiratory Therapy Degree.  (I'm totally kidding...but one of the RT's could have said...good job Mom).

Medical Memes

Up a floor, closer to the door---Monday 5:30 PM---(Post # 52)

They ended up putting more people in the PICU overflow yesterday, so they did not move us back to the main PICU.  We stayed in our same room overnight.

Today around 1 PM we moved up to the floor.  So we are in room # 7 since being here.

She is doing well.  She has been on nasal cannula all day today.  We have gotten her down from 2 liters to 1.5 liters.  We tried 1 liter, but she was not ready for that.

My aunt from Minnesota came and visited Ellie and me for several hours in the hospital.  It was super nice with her limited time here, that she came and visited.  We had a great time!

Here are the goals before going home:

-Lower the number of breathing treatments (vest and nebulized meds) to a reasonable amount that I can do at home.  We are currently doing every 4 hours.  We are going to try every 6 hours.  I want it down to 3 times during waking hours before going home.  I just can't handle more than that.

-They want IV antibiotics and inhaled Tobi antibiotic to be continued through March 8.  They do not know if I can even get these at home.  The Dr.'s are looking into it.  So she may need to stay just for that alone.

-Possibly look into why she is still having a low grade temp.

-The floor Dr. wants her o2 below 1 liter before going home.  I think I could convince her that I am comfortable at higher than that.


Medical Memes

Church---Sun 3/3/19 11 AM--(Post #51)

Jason and the Sisters came and visited Sat night.  This is Sabrina wearing a unicorn horn and braid while Tabitha photobombs with bunny ears.

Mom with the unicorn horn and braid once again being photobombed by Tabitha's bunny ears.

Tabitha painting Ellie's fingernails.

Tabitha and Ellie

Last night
The monitors here have parameters set up and if the person gets outside of the parameters for HR or RR (Respiratory Rate) or Oxygen, etc...  First the alarm starts off quiet and it gets louder and louder.  However if the machine thinks there is a REAL problem...like flat-lining...it jumps to a much louder different type of sound.  Well last night at 1 AM that really loud alarm started going off, I jumped up and it was showing her RR was flatlining.  However her HR and sats were still OK.  So the nurse and I think it was just that she breathes really shallowly that it couldn't detect her taking breaths (even though she is on the bipap).  But it really got my heart pumping.  Then I couldn't go back to sleep for an hour or 2.  Whew...nothing was going on...but man...it sure scared me.

9 AM
She did well on her nasal cannula trials yesterday.  Today we are attempting all day on nasal cannula.  Night time still on her home bipap settings and home bipap mask.

We are continuing the unusual antibiotic avycaz and need further instruction from infectious disease to see how long we are supposed to do that as well as the how long to do the inhaled Tobi.

She is still getting breathing treatments every 4 hours around the clock...they are not weaning those yet, I am guessing that will start tomorrow.  We can handle 3 treatments a day at home, beyond that it is just too consuming.

We are getting closer to coming home, but are not there yet.

She is doing so well, they would like to move her off of PICU service (PICU Dr.'s) and onto the service of the hospitalists (in hospital pediatricians).  They asked how I felt about that and I said sarcastically, "room #7 sounds great".  The attending said, we will see if they will let you stay in your room and they could come visit you down here.  We'll see.

10:30 AM Church
I love church at PCH, especially Fast Sunday (Testimony Meeting) at PCH.  It just seems to put life in perspective.  So since today is the 1st Sunday of the month it should have been Testimony Meeting.  At Testimony meeting anyone in attendance is free to get up and express their love and testimony of the Savior.  I was REALLY looking forward to it!

I quickly showered and didn't even brush my hair and ran to church on the 3rd floor.

Well apparently it wasn't Testimony Mtg today, it was Stake Conference, so there was a visiting General Authority, Elder Craig C. Christensen.  He and his wife bore their testimonies as the speakers today.  It was pretty cool to be spoken to by a General Authority in a room of about 50 people.

Elder and Sister Christensen said they have a grandchild that has been here to PCH and they have seen the growth that came to the parents and child through adversity.  Sister Christensen said that we are currently living in Gethsemane and some of us have built a house there (meaning we live in a trial) and that in the end "every tear will be dried".

Elder Christensen said that Elder Ballard called him last night knowing that he would be coming to PCH to speak and said that the quorum of the 12 and first Presidency were sending their love to us.  Elder Christensen said that we would see "spiritual miracles" in our lives.  He read Alma 7:7 which says

7 For behold, I say unto you there be many things to come; and behold, there is one thing which is of more importance than they all—for behold, the time is not far distant that the Redeemer liveth and cometh among his people.

Elder Christensen said that we are living our lives, but there is something more important that all of that, and that is the Savior.

Here is a link to Alma 7 if you want to read it.

Elder Christensen said we would be ministered to "by those not of this world" (meaning angels).

After the mtg, Elder and Sister Christensen quickly and purposefully went and stood at the door and shook everyone's hand as they exited.

Here is a link to Elder Christensen's Bio if you are interested.

Here is a pic of me looking crazy as I went to sacrament mtg today, straight out of the shower without even brushing my hair...hahahaha!

11 AM
OK new update...There are currently only 2 kids in the PICU overflow (things have slowed down) and the other kid is moving to the floor. Because Ellie is complicated, the floor Dr.'s don't want to take her today because on the weekends it is a "cross-cover team" of Dr.'s.  This means they are just temporary Dr.'s filling in for other Dr.'s for the weekend.  So if she went to the floor today, she would get a new set of Dr.'s tomorrow.  The cross-cover team seemed uncomfortable with that.  So they want to keep her in PICU 1 more night and move her to the floor tomorrow.

However, once the other little boy transfers to the floor, that will only leave Ellie in the PICU overflow, so then (more than likely) they would move Ellie back to regular PICU today (room # 7) and then move her to the floor tomorrow (room # 8).  I guess I will just have to laugh about it...because my only other option is to get mad and I don't want to be mad today.

Smile--Sat 3/2/19--3 PM--(Post # 50)

Here is a smile I got today.

Increasing her time on the nasal cannula today to (4) sets @ 2 hours each.

She is still junky and still has a low grade fever.

But is doing well.


Medical Memes

Big step forward today--Fri 3/1/19 ---1:30 PM (Post # 49)

1st time off bipap or vent in 23 days!

I almost feel like I shouldn't have to put any words...that I could just leave her picture there and you would be able to figure out the exciting step she took today!

But I won't, I will add some details.

Yesterday she did (3) sets of 2 hours each on the nasal pillow.  So 6 hours total.  The nasal pillow still has the pressure settings...but not really because a lot of the pressure comes out her mouth.

***Today the Dr wanted to do 12 hours on the nasal pillow plus 4 sets of 30 minutes on nasal cannula.  (Nasal Cannula means oxygen only...no pressure).

I felt like that was a big jump for one day...going from 6 hours of pressure on her regular full-face mask yesterday to zero time today.

But she is doing really well...so we compromised.

We will do the Dr.'s plan that I starred*** above, but I wanted to add a few times during the day that she was still on her full face mask.

I do not want to risk her lungs collapsing again.  It takes so long to recover.

So we added in (4) 1 hour times during the day that she will go back on her full face mask.

She is on her 2nd nasal cannula trial today, numbers look great...but she is sleepy.  Breathing is hard work.

Inspirational Meme

Medical Memes