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

Quite a scare (Post #48)

Some back story...our previous room was 2312 in PICU (Pediatric ICU).

Our friend (a previous respite worker) has a child in 2512 (Cardiac ICU).

At PCH the CICU and the PICU are connected...but the PICU has room numbers that start in 23 and CICU has room numbers that start with 25.

So Ellie was in 2312 (PICU) and our friend is in 2512 (CICU).

They called a code blue over at Eccles Outpatient Building.  It is where they have moved the majority of the outpatient offices.  It is across the street, but you can get there by crossing an enclosed bridge that goes over the street.  So when they called the code blue about 20 PICU Dr.'s/nurses etc...went running past our room and across the bridge.

Less than 5 minutes later they called another code blue over here in bed 2312.  (While the Dr's etc were still over at Eccles).

But I couldn't remember if PICU started with 23 or 25 or if CICU started with 23 or 25.  But I knew my friend was in bed 12.  I ran out into the hall to ask the nurse...do CICU beds start with 23 or 25????  She said 25.  Whew, it wasn't my friend's baby.

But then my friend messaged me, she didn't know we had moved late Tues night.  She thought the code blue was on Ellie.

We each thought that the code blue was for the other person's child.  YIKES!  Thankfully it was for neither of them.

Our RT went over to help with the code blue in 2312. It is now several hours later.

Ellie was supposed to have a breathing treatment 45 minutes ago.  The nurse just told me they are still working on the code blue and it is not going well.  Not good.

Medical Memes