Ellie needs your prayers

I don't know what J posted.  This PCMC computer won't pull up the screen.  So I will just post everything again.

She had her baclofen pump replacement surgery 12 days ago.  All seems to be going well with that except for the large bruise.

Wed she was sleepy all day and quite gaggy.  I vented her g-tube (to get air out of her tummy) and suctioned her.  I only got secretions from her nose I didn't get anything if I went deeper.  I figured she was probably getting a sinus infection.  Sats were good.  Maybe just a teeny bit congested, but only upper airway.

We left Wed afternoon to go camping.  We left Ellie home with her respite worker.  Ellie really hates camping (bugs, sun, heat, bug spray, sunscreen, cold at night---gee it's a wonder any of us like it!!!)

She did fine Wed night.  Thur afternoon I talked to her respite worker and she said Ellie had been doing fine.  No gagging, not congested.  sats at 95 (great!).

Thur night Jason checked his phone (which was charging in the truck) and we had a million mised calls and we saw that a bunch of them were from Ellie's respite worker.  We called her immediately.

She said that she sat her up to do her hair and her lips turned blue.  She checked her o2 and it was in the 60's.  She tried putting a nasal canula on her, but couldn't bring her sats up.  She called 911.  (You did great---just what you should have done!)

She was transported by ambulance to Ogden Regional.  They had her on 10 liters of o2 and she was satting in the high 80's when awake and low 80's when asleep.  (not good).  J and I got there maybe an hour after Ellie got there.  They had done blood work, snot cultures, and x-rays.

X-rays showed right lung pnemonia.

They transported by amblance.  I was really worried because the last time nemonia came on so suddenly was the really agessive double pnemonia a efw years back when she was intubated for 18 days in ICU at PCMC.  That time they had life-flighted her.

She made it to PCMC without incident.  The ambulance driver said that he drove really fast.  I don't think I believed him.  I loaded her wheelchair into my van and was going to follow the ambulance.  I saw the ambulance pull out and I started following it.  It was going so fast I couldn't catch up to it for a while.  We were going a weird way, but I thought "he knows what he's doing!".  When I finally caught up to it I realized it was the wrong ambulance.  So I chaned my route and started heading down on my own.  When I got on the freeway (in riverdale) an ambulance was a few cars back from me.  I thought..."I'll just see if that's them and if it's not I'll stop worrying about finding them.

ITWAS THEM.  It was a miracle.  Out of all the ways they could have taken, we took the same way and caught up to each other.  I go behind them and I don't think he went under 90 until he got off at Beck street.  I was hoping if I got plled over I would get a sympathetic cop.  But I didn't get pulled over.

She was taken tot he ER.  she was dipping down (o2) to the 70's.  Her bloodwork and lungs and x-rays didn't look that bad.  But she was not responding to the o2.  They tried putting her on bi-pap with her home full face mask and she dropped a lot.  THey tried raising the bi-pap settings and she dropped a lot.  They had to bag her (blow breaths of air into nose and mouth by hand, with o2 at 10 liters)  They could bring her up unto the 90's but it was a lot of work and requiring a lot of pressure to do it.

They had to intubate her (which I have never actually seen done.  I wouldn't recommend it.  They gave her a heart medicine and a narcotic, but not a paralytic.  She did fine.  They didn't have any problems intubating (breathing tube in mouth).  They were still bagging her very aggressively.

They got her a bed in PICU (Pediatric Intensive care unit).  They moved her.  THey got her hooked up to a ventilator.  They had to play around with her settings.  She is still hanging out around the low 90's (not great).  Her blood pressure is low.  She has been geting medication to bring it up (dopamine), ut it hasn't worked yet.  THey think when her BP comes up her sats will come up.

It was a very scary night.  She is really sick.  I don't think it's as bad as the double pnemonia a hew years ago.  But she is very sick.

She seems to be stable now.  But not great.  (sats are fairly low) (BP is low).

Whiteblood cells are down (probably an infection).

X-ray this morning show pnemonia on both sides with fluid in the right side.  (They thought last night mabe it was just part of her lung had collapsed and once she was on the vent for a few hours it might open up.  But now they are saying it is probably fluid).

They have been pumping her full of antibiotics.  Her blood sugar has been good.

So I came here straight from camping...So I really wanted a shower and to wash my clothes.  I asked the nurse for an adult sized gown so I could clean up.  She thought it was funny, bt she did it.  She said "How are you going to wash your clothes".  I said "there's a washing machine in NTU or on the 3rd floor."  I love/hate it when I know more about the hospital then the nurses. 

Anyway, I must be a sight to see,,I am sitting in the 3rd floor lobby in a hospital gown with wet hair typing away on the computer.  Oh-well, at least I'll have clean clothes.

Well it's 8:800 time for me to go (they kick parents out from 7-8 int he morning and at night in ICU for shift report which is ridiculous...they're talking about your own child.  Don't you deserve to hear?!?!?)

Please keep her in your prayer.  We are not out of the woods by any means.  We are either just entering the woods, or wandering around aimlessly in the woods (whichever sounds worse to you).