Room #6---Thur 2/28/19 10:30 AM (Post # 47)

I did not update yesterday.  Sorry for anyone who got worried. Ellie is doing fine.  I was just in a really really really bad mood.  Just a...don't look at me or you will lose your head kind of day.  Whoops!  Sorry nurses that I was short with and Dr.'s that I crossed my arms at.  It was the most patience I could muster.  And that was basically 0 patience.  I just could not snap out of it ALL DAY long.  I was trying...but it did not happen.

Today is better.  I think I was tired.  I know it's an excuse, but I also think it was the truth.

Anyway.  Tues night at 11:30 PM(I was already asleep) the nurse said we were changing rooms.  So I got up and packed up all of our bags.  They were moving us back to the PICU overflow in NTU.  Over here they have 2 to 1 nurses instead of 1 to 1 nurses.  I had been expecting a move for a few days, but why did they have to do it in the middle of the night?

I was really grumpy and sad to leave my HUGE nice new room in PICU and come to a tiny old room in the PICU overflow where I have no cell phone coverage unless I am over by the window.

So the good news is they think she is stable enough to move back over here and have a 2:1 nurse.

The other good news is that because she is MDRO (Multi Drug Resistant Organism AKA Superbug) they literally throw away ALL CONSUMABLES when you leave a room.  So I got about 4 of the really nice hand sanitizers ($11 each) that insurance doesn't pay for, Probably 8 boxes of gloves and some other odds and ends.  I am super excited about the hand sanitizers.  I truly can't believe they throw them away.  Doesn't that seem weird/ironic that they would throw them away?

They told me that I got to keep my nurse for the night (Tues night onto Wed morn), so that was good.  But then when I woke up Wed morning, they had stolen her nurse in the middle of the night.

Then after we moved, she had 2 desats into the 60's early early Wed morning.  I think she was rebelling being over here also.  hahaha

I think between the late night move, going to a worse room, stealing my nurse without telling me, the 2 early morning desats, plus Wednesday was day 2 of me cutting carbs and sugar (carb withrawal)..it was just a crazy grumpy day.

Tuesday the Dr. wanted her to do a trial on a nasal pillow instead of full face mask on the bipap.  A nasal pillow block off her nostrils whereas her normal bipap mask (called a full-face mask) covers her mouth and nose.

We have tried a nasal mask (not covering mouth) before and the air just comes out her mouth, hence why she normally needs a full-face mask..

The reasons the Dr. wants to do the nasal pillows is  #1) to give the skin on her face a break (this reason I totally agree with) and #2) The Dr. is using it as an in-between step of still giving her pressure, but not as much pressure, before trialing going on the nasal cannula only (nose prongs giving oxygen but no pressure).  It is kind of a weird way to ween off the bipap.  We have never done it this way before.  I guess it will work, but it is weird.

Nasal Pillows

The Dr also wants to go on slightly lower settings while on the nasal pillow.  It is not much different.  Actually I think she is on a much much lower pressure than the bipap is delivering since most of the air comes out her mouth anyway.  I also think lowering these settings while on the nasal pillows is unnecessary, but oh well.

The Dr. is trying to be really conservative in her weaning process because it is so much harder to get the lungs re-inflated once they are collapsed.

Tues we tried the nasal pillows for 1 hour.

Wed (yesterday) we tried the nasal pillows twice for 1 hour

Today we will try the nasal pillows 4 times for 2 hours each time.

We also have been sitting her up in her chair once a day for about a week now.  We have aimed for twice a day...but it just hasn't happened.  Yesterday (Wed) we got her up twice.  Today we are aiming for 3 times of getting her up.

She is still having low-grade fevers.  I am super frustrated with that.

But she is doing good.  She is coughing up a lot of stuff (good).  She is awake for the entire day (good).  She has stable vitals all of the time.

Today is day #22 and we the 6th different room.

In other hospital news...they have a new expansion coming up.  It will be just East of the current PCH entrance, still attached to PCH.  They will be moving offices into this building which will allow PCH to expand their inpatient units.  (Greatly needed!!!!!!!).

New expansion will be glass building on the left.

New part has a yellow arrow pointing at it.

New building will house security, family support, social work, etc.  Completion in Summer 2020.  This will allow them to expand their inpatient units.

Spiritual Meme

Medical Memes

No update---Tues 2/26/19 11 AM (Post # 46)

Everything is the same.  No real updates.
Low grade fever is back.
Lowered bipap settings from 20/10 to 18/9 last night at 10 PM.  Still working harder to breathe (but not harder than she was on 20/10.)
The end

Medical Memes

More of the same---Monday 2/25/19 @ 5 PM---(Post #45)

Spiritual Thought

I have 3 additional quotes from fantastic "pick-me-up" talk!  A real "you can do it" speech!  You can find the whole talk here.  If you are feeling down/discouraged, please read or listen to it!

Quote #1

The world often uses a feeling of discontent as an excuse for self-absorption, for turning our thoughts inward and backward and dwelling individually on who I am, who I am not, and what I want. Divine discontent motivates us to follow the example of the Savior, “who went about doing good.”

Quote #2

Remember the loaves and the fishes? Each of the Gospel writers tells how Jesus miraculously fed the thousands who followed Him.16 But the story begins with the disciples’ recognition of their lack; they realized they had only “five barley loaves, and two small fishes: but what are they among so many?”17 The disciples were right: they didn’t have enough food, but they gave what they had to Jesus, and then He provided the miracle.

Have you ever felt your talents and gifts were too small for the task ahead? I have. But you and I can give what we have to Christ, and He will multiply our efforts. What you have to offer is more than enough—even with your human frailties and weaknesses—ifyou rely on the grace of God.

Quote #3

C. S. Lewis explained God’s transforming power this way: “Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably. … [You see,] He is building quite a different house from the one you thought of. … You thought you were [being] made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.”

Update on Ellie

Legs bound with an elastic abdominal binder so they can be in different position other than "frogged" out.

Today as been about the same...

Still coughing up a lot of stuff
Still working harder to breathe
Still on same vent settings 20/10
Still 1 pupil dilated and 1 normal
Still awake and alert
Still maintaining sats

The one thing that is different (better) today is that her fever is gone.  I am thrilled with this.  The fever was SUPER concerning for me.  I think the antibiotics are finally working on her UTI.  One of the Dr.'s today said it was strange that her last 3 UTI's have been Enterovirus...she wanted to know..."why enterovirus?"  I think she was asking...are we are never fully eliminating it?

I asked the Dr.'s of they would intubate if she was maintaining sats but continued to work harder to breathe.  They said no.  Not unless she starts showing other signs such as heart rate getting elevated, working even harder to breathe, sats declining etc.  But the way she stands now they are not considering it.

I told them that I feel it has been a set-back since she was extubated.  They feel like she is progressing.  They said extubating is a form of weaning in and of itself.  Plus her breathing muscles might be weak from not working for 2 weeks.  Plus she still has a lot of junk she is fighting in her lungs. 

The Dr.s think she is doing good.


Medical Memes

Stresshausted--Sun 2/24/19--11:30 AM (Post # 44)

8 am
Do you like my new word I made up?...stresshausted.

Before I launch into my worries, let me just say that Ellie is fine.  We are having a few issues, but she is still doing ok.

I feel like we are back at square one, a lot of the same problems as when we first came in.  It is not 100% true, but it kind of feels true.  She has made a ton of progress, so it is really not true.  But some old issues have cropped up.

Since extubating she has been retracting (sucking her throat in while inhaling) and belly breathing (belly moving a lot while breathing) and giving a little push at the end of her exhale.  Basically it means she is working harder to breathe since being extubated.

They initially tried her normal night-time bipap settings of 16/8, but due to her work of breathing they increased it to 20/10.  She is still working harder to breathe.

This morning she was pale, then later she was flushed, now (11:30 AM) she looks normal.

She still has a low grade temp.

She woke up this morning  with 1 pupil larger than the other and not reactive to light.  The same as when we came in.  (I can't however remember if they were reactive to light back then...I think they were not).  This has happened other times when she is sick.  We are unsure of what it means.  During other hospital stays they have done EEG's and cat scans etc to try and figure it out.  Their best explanation is that it can be a side-effect of Ipatropium Bromide (Atrovent---one of her inhaled meds).  I don't really buy it, since she uses that med twice a day at home and she only gets this weird eye thing while she is sick.

Since being extubated she is a lot more junky.  They are suctioning out a LOT of stuff.  This is good.  (The junky isn't necessarily good, but at least she is coughing it up.  That is good.  Better out than in.)

Her PICC line is slightly red.  The new dressing they put on Thursday has a little gel pad.  I think she is sensitive to it and that is what is making it slightly red.  They sent by the PICC team today.  They think it looks fine.  When they change the dressing on Thursday they can put on a new dressing without the gel pad, but they do not want to change the dressing an extra time and risk infection.

She has had decreased urine output yesterday and today.  Some days are like that for her and then she will catch up.  But of course in this case I am worried about her kidneys from the colistin.

11:30 PM
Still retracting and belly breathing.

Color looks better.

Pupils still weird.

She is awake and comfortable.

Still coughing up a lot of stuff with breathing treatments.

She is doing OK.  I am not quite as worried as I was earlier this morning.

They are going to add in more breathing treatments.  If they don't help with her work of breathing, I think they will reintubate.  I don't think we have ever reintubated.  I would hate to do it, her voice sounds so scratchy and sore.  But we will if we have to.

Wait a little longer on the urine output and see if she catches up before freaking out.

Spiritual Thought

This picture is referencing the woman with an "issue of blood" found in Mark 5 who touched Christ's garment and was healed.  I imagine that the woman was completely stresshausted.  She had gone to lots of Dr.'s, spent all of the money that she had and nothing had helped, her medical problems were actually worse. She had faith if she could just touch Christ's garment that she would be healed.  And she immediately was.  Christ asked "who touched my clothes?"  I imagine that Christ knew exactly who had touched His clothes.  But he wanted her to "come unto Him". 

Christ waits to heal us.  Not always in the way we want, Not always in the time frame we want.  But healing is waiting for us. 

Several things we can learn from this woman,
#1) Have faith that God can heal us
#2) Act
#3) Come to Christ
#4) Fall down before him
#5) Tell Him all the truth
#6) Go in Peace and be healed.

You can read more about the woman with an issue of blood on these links...
Here and Here and Here

Medical Memes

Raise settings---Sat 2/23/19---9 PM (Post #43)

We extubated and went straight to her home bipap settings of 16/8 with a rate of 12 at about 1:25 PM.

She is satting great.  But is retracting a little and using her stomach to breathe more than anyone would like.

We increased her bipap setting back up to 20/10.

She is not happy with the bipap mask and her throat is sore from the breathing tube.

I think she will be OK overnight.  I don't think we will have to reintubate.  But I also don't think she's doing great, so it wouldn't surprise me if we do have to reintubate.  I am leaning toward we won't have to.  We will have to wait and see.

The charge nurse said she might move us back over to the PICU overflow if they "get crowded".  I think if she says we are doing that I will make sure she has talked to her Dr.'s.  I do not feel like she is in a stable place right now.  And ya, they are crowded...hello...there are no bed spaces and they have a PICU overflow.

Once again, she is doing good with her sats....I just don't love that we had to go to such high pressures right away.  She really seemed to do better breathing being intubated.

Spiritual thought

Medical Memes

Extubated! Sat 1:45 PM (Post # 42)

Spiritual Thought

(If you like the Spiritual Meme...here is the talk it came from)

Update on Ellie
Yea she was finally extubated at 1:25 PM today!

She is doing great on her Bipap.

She is tired and her throat is sore.  We are giving Tylenol.

She was intubated on Tues Feb 12, so 11 days.

They have stopped her Colistin ("Toxic" antibiotic).  The new one they started last night is 2 antibiotics in 1.  It is called avycaz.  It contains ceftazidime and avibactam.

Before

After

Medical Jokes

Big Step! Sat 2/23/19 (Post #41)

Spiritual thought for the day:

The plan last night was to turn of her feeds at 2 AM and extubate at 8 AM.  At 8 AM they bumped it to 10 AM.  It is now 10:25 and no extubation yet.

They have her on a breathing trial (just for fun basically) while we are waiting.

She is doing really well.  Her HR does go up on the breathing trial.  But no one seems concerned about it except me.

I am glad we didn't extubate yesterday.  It allowed us to give her the first dose of her new antibiotics (that potentially she could have an allergic reaction to) with a secure airway.

She did not have any reaction to the new antibiotics.

They still have her on the old "bad" "toxic" antibiotic also.  I need to ask them what the plan for that is.

I am OK that they are late.  I am OK with extubating.  I am OK going straight to bipap.

Today is a better day (emotionally) for me.

Ellie is fine with waiting also.  She is the MOST patient person that I have ever met, EVER!!!!!!!!!!!!

Waiting for extubation

Vent on the left and bipap on the right  (when extubated we will be switching from vent to bipap)

Everything is ready to go to extubate.  They have the intubation cart outside her room.  If she does not tolerate extubation, then they would re-intubate.  So they always have the cart ready to go in case that happens.  They do not like to re-intubate if they can help it because it causes trauma to the mouth/throat when you intubate.  But if they have to, then of course they will.

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Medical Jokes