Conglomerate post

Sorry this post will be covering so many days at once.  It has been hard to maintain her blog without a computer.

When I say desat or desatted (in this case) it means she obstructed her airway.  Something physically got in the way of her being able to breathe (tongue, airway collapse, secretions/mucus plugs).  When this is happening (and happens at home also) her sats (amount of oxygen in her blood) lately drop to anywhere from 60- 85%.  85% is not terribly bad (you wouldn't want to stay there for a long time)...but 60% is start freaking out bad.  So some desats are worse than others.

Our cure lately has been tilt her head back, turn the o2 up and do a jaw thrust (pull her jaw forward).

Fri 4/7/17 Day 4
Her sodium was low so they did a renal panel (blood work to check kidneys).  It came back fine and her sodium corrected itself so it is no longer a concern.

They gave her extra free water (meaning increased fluids by giving her some water) through her gtube on Fri and Sat.   To help with a low fluid output.

Awake all day Fri.

She was up to full feeds on last Wed or Thur (Day 2 or 3) and has continued to do well with her regular nutrition that she gets at home  (both quantity and recipe).

The tops of her arms were red and hot to the touch and she was uncomfortable.  I remembered that they had used 2 warming lamps for several hours straight in the ED on Tues.  So I drew the conclusion that she had gotten sunburned.  I know this would be unusual because it was a few days later instead of that day or the next day.  But we couldn't come up with another explanation.  However the redness disappeared on it's own by that night (several hours later).  So it was not a sunburn.  It has not returned.  We do not know what it was.

She maintained the same settings on bipap 16/8 (she started at 18/10 originally). 

We were able to lower her oxygen to 30% and maintain her sats (oxygen in her blood).

Desatted twice during the night.

Sat 4/8/17 Day 5
Able to lower bipap settings to 14/7 which are her normal home settings.  She was just using it non-stop which she normally does not do.

Oxygen remained at 30%.

Jason came and stayed the rest of this day and overnight.  So I could attend my other daughters dance competition in Park City and teach Relief Society the next day.

She was awake the remainder of the day.

Desatted twice during the night.

Sun 4/9/17 Day 6
Awake all day.

This morning did a 1 hour trial off of bipap and only on nasal canula.  She did great.  No problems.

This evening she was supposed to do a 2 hour trial off bipap...but it ended up being 3 hours.  She did great.  No problems.  She was smiling and talking and moving her arms (meaning she was happy and wanted more).

Sunday night was rough...5 desats.  When I say rough, I mean for both Ellie and myself.  Because I get up each time she desats to help bring her sats up.  I am more familiar with exactly the best way to position her head to have the best airway etc.

Monday (TODAY) 4/10/17 Day 7
Awake this morning.

Started a 4 hour trial off bipap.  And sat her up in her wheelchair (for 1.5 hours) for the first time since we came in last Tues. 

She was EXTREMELY smiley off the bipap and sitting up in the wheelchair.

But she only made it 2 and a half hours on the trial.  She started getting sleepy.  It told me that she was worn out.  Working too hard to breathe.  Her sats were still good.  But I didn't want to wear her out any more. 

I asked for her Ritalin to be given a little early.  This is a daily med that she gets at home also.  She gets Ritalin (a stimulant) to wake her up in the morning and afternoon.  They were able to give the Ritalin, but she still didn't wake up.  So we put her back on bipap.

We will try another 4 hour trial tonight.

We have been doing breathing treatments q4 (every 4 hours around the clock).  Vibrating vest and nebulized meds.  At home she does duoneb (albuterol and iprotropium bromide) and 7% hypertonic (extra salty) saline twice a day.  A few days in they swapped out the duoneb for straight albuterol followed by the saline because the duoneb can dry out secretions and they wanted them wet and loose to cough them up.  She has been doing the albuterol q4 but the hypertonic saline cannot be given more than twice a day.  Today we are switching back to duoneb which they will do q4.

If we get to 4 hours off the bipap, they will consider moving us to the floor. 

It is more work for me on the floor because the nurse to patient ratio is higher.  In PICU each nurse has 1 or 2 patients.  On the floor each nurse has maybe 4 patients?!?!?!?

I  discussed with the resident and the respiratory therapist if we want to stop the trial when she gets sleepy or push her farther as long as maintaining sats.  We probably want to stop and then get a blood gas.  To make sure she is not retaining Co2 (which can make you sleepy).

The resident also called her regular pulmonologist.  They chatted and think things are improving.  And we should follow up after discharged.  I could have told you all of that.  Ha ha!  Oh well.  It's fine! 

The resident wanted to flush out a "sick" plan that maybe we could ramp things up at home before coming into the hospital.  I already imcrease breathing treatments, increase suctioning, increase meds, increase oxygen, increase monitoring. 

I do not think an additional plan is necessary.  I wouldn't feel comfortable doing anything more than I do at home.  I think the pulmonologist agreed because no plan was made.  Just the plan to follow up with her after discharge. 

I'm not sure what more they think I could do.  Change her bipap settings higher?!?!?!?  Use high flow o2?!?!?!?  But I wouldn't have an xray or blood gases.  I keep her at home until I am no longer comfortable and then bring her in.  And typically she is sick enough to be admitted.  Such as this time.  She was admitted to ICU...they want a plan for me to take care of someone sick enough to be admitted to ICU?  It doesn't make any sense.  Good thing her pulmonologist knows our situation.