Monday, July 22, 2013

Motoring Around....

Funny how things can change in a matter of hours.  Although liver wise, everything looked fine, yesterday brought on some other concerns.
Alexa spent most of the day sleeping, the time awake was spent in crying in pain and frustration.  The only moment we saw a smile on her face, was when daddy came to visit her:

Her blood pressure had slowly started to creep up; the theory was that it was due to all the water that she was retaining, and her temperature was also slowly on the rise.
Her night was not great--not PICU horrible (like that second night) but not so good.  She was up every couple of hours and was being very uncooperative with her vital signs checks, trying to pull at her lines and generally unhappy.
Her dad had a similar night---I think we were all just frustrated this morning!

To wake up and hear that a fever is looming was not what I wanted to hear.  The GI nurse practioner came in and set up some plans:
--an albumin transfusion with laseks (not sure of the spelling!)to help her dispell all that extra fluid--and it has worked in just a couple of hours.  
--continued monitoring of her blood pressure--it seems that too was helped out by the releasing of the extra fluid as it has come back down into acceptable range without extra medication
--continued monitoring of her temperature.  We are happy under 37C(98.6F).  If she got up to 38C (100.4F) we were going to start a round of antibiodics and grow cultures, etc.  I did NOT want to go there, so I am quite happy that all subsequent temperatures have been consistently between 36.6 and 36.9C.
--attempting some solids--we are not doing great here. Although she has eaten some jello and raspberries, it is not out of wanting it but more at my insistence!

Alexa has been up for more awake time, and more importantly her time awake is not spent crying...I would not go as far as to say she is happy, but there is definite marked improvement from yesterday.  She is falling asleep easier, without the extra bolus of morphine, so that is improvement and her time in between that extra bolus is getting longer and longer.  She doesn't have much interest in playing with her toys or watching her iPad, but she did muster up enough energy to play with her baggy of tourniquettes, alchohol wipes and gloves.  That was the one smile we got this morning!
You can see that she was still quite swollen at this point.

And then the transfusion finished, and she got another visit from daddy (who is looking and feeling better with life this afternoon!) and things started turning around.

She got a visit from the physiotherapist who suggested that we get Alexa up and sitting in a chair and even a couple of steps in the hall.  
Well Alexa jumped off the bed and took to the races...seriously this girl was motoring, surprising everyone including the PT.  I think she actually surprised herself as she got to the nurses station, turned aournd looked at me with tears in her eyes and asked me to pick her up.  But the PT knew she could make it back, so we encouraged a bit more and she made it all the way back to her room!  Seriously this girl is just amazing!

And then she did her sitting exercises:

When she was done, she was in some pain and quite tired. It was clear daddy and daughter needed a nap.

Have you ever seen anything sweeter?

1 comment:

  1. No. No I haven't seen anything sweeter! So proud of your family, and so thrilled that she is up and moving around and recovering so well!
    Keep up the hard work, Alexa-you're a champion!