Two steps forward...one step back

So Friday Amie was the star of the ward!  She was making magnificent progress & was moved to step down around 5-6 PM!  She got to order eggies for the first time (she loves eggies!)  But a few bites and she was sick to her stomach.  :(

She had a few scary spells on Friday - and by Friday night I had a sneaky suspicion that she wasn't handling her liquids well.  She used to aspirate quite a bit, but that problem had been gone since she was about 3 1/2...however, we do know that she is always penetrating into her airway, but has always been able to clear it without aspirating.  I'm afraid from what we were seeing she was not being able to clear it.  On top of that they reduced her anxiety medicine & she was really having a difficult time with how she was feeling by Friday night.  But we were hopeful that she would sleep pretty well anyway.

Since Thursday night I stayed in her room, it was Darwin's turn to stay in her room Friday night & I went back to the hotel & zonked!!

Unfortunately, Amie took a turn for the worst by 11pm & she and Darwin were up all the rest of the night.  She had to be put on 20 liters of forced air at 50% oxygen.  She was put back on the sedation/axiety medicine & given lasix because her chest x-ray showed her lungs were filling with fluid!

In pictures - here's what I captured - this was her sticking her tongue out at Kylee at about 5pm Friday night.  She was very interactive, tired but doing super!

This was her by Saturday morning - she got moved back to the PICU by 5am.  She spent most of the day like this.  Just rosing with pain.  For whatever reason, her right side/back is what she is complaining about the most.



Finally around 5pm last night her lungs and breathing was doing fantastic!  She had her heart rate down exactly where they wanted it (it had been running in the 120-150 range most of the day).  Her o2 saturations had been good all day with the forced air (100%!) & her respirations were down below the goal of less than 26 per minute (she had been running in the 50-60s all day).  And blood pressure is in great shape!

At 8pm she was feeling well enough to do a little coloring!  Pain meds have been changed, sedation is being reduced, lasix is on a schedule & chest x-ray in the morning.

They haven't been in for the chest x-ray yet, but she had a fantastic night!  She only woke a few times and went back to sleep.  She is up now watching a movie and coloring some more!  The sedation medication is off, she had some side/back pain again a little bit ago and got her break through pain medicine, so I imagine she will be falling asleep again soon - but thats ok, because she's hungry & can't eat until the forced air is off of her!  So - hoping it continues to go in this direction!